WorldWideScience

Sample records for cancer registries 1973-2000

  1. What are cancer registries

    Directory of Open Access Journals (Sweden)

    Miladinov-Mikov Marica

    2004-01-01

    Full Text Available Introduction Population-based cancer registries attempt to collect, process, analyze, store and interpret data on persons with cancer in a certain population (most frequently a geographical area. Hospital-based cancer registries register all cases in a given hospital, usually without knowledge of the background population; the emphasis is to serve the needs of the hospital administration, the hospital cancer program, and, above all, the individual patient. History of Cancer Registries Registration of persons suffering from cancer is a slow process. Around the year 1900, England and Germany demanded improvement of statistical investigation on spread of cancer in population in order to undertake etiological researches. The oldest example of a modern cancer registry is that in Hamburg. Today there are more than 200 population-based cancer registries, but they cover only 5% of the world population, mainly in developed countries of the world. Cancer registry of Vojvodina Cancer registry of Vojvodina was established in 1966; it is a member of International Agency for Research on Cancer (IARC and it is still the only cancer registry from our country whose data are cited in scientific monographs of IARC. The main purpose of cancer registries is to produce statistics on the occurrence of cancer in a defined populatin and to provide a framework for assessing and controlling the impact of cancer on the community. Cancer registries are essential parts of any rational program of cancer control. Their data can be used in a wide variety of areas of cancer control, ranging from etiological research in epidemiology, through primary and secondary prevention to health-care planning and patient care, so benefiting both the individual and society.

  2. Breast and Colon Cancer Family Registries

    Science.gov (United States)

    The Breast Cancer Family Registry and the Colon Cancer Family Registry were established by the National Cancer Institute as a resource for investigators to use in conducting studies on the genetics and molecular epidemiology of breast and colon cancer.

  3. New registry: National Cancer Patient Registry--Colorectal Cancer.

    Science.gov (United States)

    Wendy, L; Radzi, M

    2008-09-01

    Colorectal cancer is emerging as one of the commonest cancers in Malaysia. Data on colorectal cancer from the National Cancer Registry is very limited. Comprehensive information on all aspects of colorectal cancer, including demographic details, pathology and treatment outcome are needed as the management of colorectal cancer has evolved rapidly over the years involving several disciplines including gastroenterology, surgery, radiology, pathology and oncology. This registry will be an important source of information that can help the development of guidelines to improve colorectal cancer care relevant to this country. The database will initially recruit all colorectal cancer cases from eight hospitals. The data will be stored on a customized web-based case report form. The database has begun collecting data from 1 October 2007 and will report on its first year findings at the end of 2008. PMID:19230248

  4. Multicenter breast cancer collaborative registry.

    Science.gov (United States)

    Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

    2011-01-01

    The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute's Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product.The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC). PMID:21918596

  5. Linking Medicare, Medicaid, and Cancer Registry Data...

    Data.gov (United States)

    U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...

  6. Veterans Affairs Central Cancer Registry (VACCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Veterans Affairs Central Cancer Registry (VACCR) receives and stores information on cancer diagnosis and treatment constraints compiled and sent in by the local...

  7. PCCR: Pancreatic Cancer Collaborative Registry.

    Science.gov (United States)

    Sherman, Simon; Shats, Oleg; Ketcham, Marsha A; Anderson, Michelle A; Whitcomb, David C; Lynch, Henry T; Ghiorzo, Paola; Rubinstein, Wendy S; Sasson, Aaron R; Grizzle, William E; Haynatzki, Gleb; Feng, Jianmin; Sherman, Alexander; Kinarsky, Leo; Brand, Randall E

    2011-01-01

    The Pancreatic Cancer Collaborative Registry (PCCR) is a multi-institutional web-based system aimed to collect a variety of data on pancreatic cancer patients and high-risk subjects in a standard and efficient way. The PCCR was initiated by a group of experts in medical oncology, gastroenterology, genetics, pathology, epidemiology, nutrition, and computer science with the goal of facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention and treatment strategies against pancreatic cancer. The PCCR is a multi-tier web application that utilizes Java/JSP technology and has Oracle 10 g database as a back-end. The PCCR uses a "confederation model" that encourages participation of any interested center, irrespective of its size or location. The PCCR utilizes a standardized approach to data collection and reporting, and uses extensive validation procedures to prevent entering erroneous data. The PCCR controlled vocabulary is harmonized with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT). The PCCR questionnaire has accommodated standards accepted in cancer research and healthcare. Currently, seven cancer centers in the USA, as well as one center in Italy are participating in the PCCR. At present, the PCCR database contains data on more than 2,700 subjects (PC patients and individuals at high risk of getting this disease). The PCCR has been certified by the NCI Center for Biomedical Informatics and Information Technology as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product. The PCCR provides a foundation for collaborative PC research. It has all the necessary prerequisites for subsequent evolution of the developed infrastructure from simply gathering PC-related data into a biomedical computing platform vital for successful PC studies, care and treatment. Studies utilizing data collected in the PCCR may engender new approaches

  8. Emerging roles for cancer registries in cancer control.

    OpenAIRE

    Greenwald, P.; Sondik, E. J.; Young, J. L.

    1986-01-01

    Cancer registries are a vital part of the national cancer effort to cut United States cancer mortality rates in half by the year 2000. Registries provide the data to focus programs and monitor progress. Success in meeting the year 2000 goal will require aggressive attention to the opportunities for prevention, early detection, treatment, and applied cancer control research, all of which complement the current emphasis on basic research.

  9. Thyroid Cancer and Tumor Collaborative Registry (TCCR)

    OpenAIRE

    Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B.; Sherman, Simon

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may ...

  10. Encouraging Health Information Management Graduates to Pursue Cancer Registry Careers.

    Science.gov (United States)

    Peterson, Jennifer

    2016-01-01

    The cancer registry profession has grown dramatically since its inception in 1926. Certified tumor registrars (CTRs) have become an integral part of the cancer care team by providing quality cancer data for research, statistical purposes, public health, and cancer control. In addition, CTRs have been found to be valuable in other cancer and health-related fields. Based on the need for high-quality, accurate data, the National Cancer Registrars Association (NCRA), the certification body for CTRs, has increased the educational requirement for eligibility for the CTR certification exam. This has resulted in fewer individuals who are able to meet the requirements for CTR certification. In addition, the existing cancer registry workforce is, on average, older than other allied health professions, and therefore will face an increasing number of retirements in the next few years. The high demand for CTRs, the decreased pool of CTR-eligible applicants, and the aging cancer registry workforce has resulted in an existing shortage that will only get worse as the population ages and the incidence of cancer increases. Health information management (HIM) students are well suited to pursuing further training in the cancer registry field and gaining the CTR credential. HIM students or new graduates have the needed skill set and education to pursue a cancer registry career. There are many avenues HIM educational programs can take to encourage students to pursue CTR certification and a cancer registry career. Including cancer registry functions in courses throughout the HIM curriculum, bringing in cancer registry speakers, encouraging networking, and promoting the cancer registry field and profession in general are just a few of the methods that HIM programs can use to raise awareness of and promote a cancer registry career to their students. Illinois State University has used these methods and has found them to be successful in encouraging a percentage of their graduates to pursue

  11. Thyroid Cancer and Tumor Collaborative Registry (TCCR).

    Science.gov (United States)

    Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC. PMID:27168721

  12. Thyroid Cancer and Tumor Collaborative Registry (TCCR)

    Science.gov (United States)

    Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B.; Sherman, Simon

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC. PMID:27168721

  13. The role of cancer registries in cancer control.

    Science.gov (United States)

    Parkin, Donald Maxwell

    2008-04-01

    Cancer control aims to reduce the incidence, morbidity, and mortality of cancer and to improve the quality of life of cancer patients through the systematic implementation of evidence-based interventions in prevention, early diagnosis, treatment, and palliative care. In the context of a national cancer control program (NCCP), a cancer surveillance program (CSP), built around a population-based cancer registry, is an essential element. Data on the size and evolution of the cancer burden in the population are essential to evaluation of the current situation, to setting objectives for cancer control, and defining priorities. Cancer data are essential in monitoring the progress of the implementation of an NCCP, as well as providing an evaluation of the many individual cancer control activities. In the context of an NCCP, the CSP should provide a focus of epidemiological expertise, not only for providing statistical data on incidence, mortality, stage distribution, treatment patterns, and survival but also for conducting studies into the important causes of cancer in the local situation, and for providing information about the prevalence of exposure to these factors in the population. Cancer surveillance via the population-based registry therefore plays a crucial role in formulating cancer control plans, as well as in monitoring their success. PMID:18463952

  14. Prostate Cancer Registries: Current Status and Future Directions

    OpenAIRE

    Gandaglia, G; Bray, F.; Cooperberg, MR; Karnes, RJ; Leveridge, MJ; Moretti, K; Murphy, DG; Penson, DF; Miller, DC

    2016-01-01

    © 2015 European Association of Urology. Context: Disease-specific registries that enroll a considerable number of patients play a major role in prostate cancer (PCa) research. Objective: To evaluate available registries, describe their strengths and limitations, and discuss the potential future role of PCa registries in outcomes research. Evidence acquisition: We performed a literature review of the Medline, Embase, and Web of Science databases. The search strategy included the terms prostate...

  15. Report of incidence and mortality in China cancer registries, 2009

    Institute of Scientific and Technical Information of China (English)

    Wanqing Chen; Rongshou Zheng; Siwei Zhang; Ping Zhao; Guanglin Li; Lingyou Wu; Jie He

    2013-01-01

    The National Central Cancer Registry (NCCR) collected cancer registration data in 2009 from local cancer registries in 2012,and analyzed to describe cancer incidence and mortality in China.Methods.:On basis of the criteria of data quality from NCCR,data subrnitted from 104 registries were checked and evaluated.There were 72 registries' data qualified and accepted for cancer registry annual report in 2012.Descriptive analysis included incidence and mortality stratified by area (urban/rural),sex,age group and cancer site.The top 10 common cancers in different groups,proportion and cumulative rates were also calculated.Chinese population census in 1982 and Segi's population were used for age-standardized incidence/mortality rates.Results:All 72 cancer registries covered a total of 85,470,522 population (57,489,009 in urban and 27,981,513 in rural areas).The total new cancer incident cases and cancer deaths were 244,366 and 154,310,respectively.The morphology verified cases accounted for 67.23%,and 3.14% of incident cases only had information from death certifications.The crude incidence rate in Chinese cancer registration areas was 285.91/100,000(males 317.97/100,000,females 253.09/100,000),age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) were 146.87/100,000 and 191.72/100,000 with the cumulative incidence rate (0-74 age years old) of 22.08%.The cancer incidence and ASIRC were 303.39/100,000 and 150.31/100,000 in urban areas whereas in rural areas,they were 249.98/100,000 and 139.68/100,000,respectively.The cancer mortality in Chinese cancer regist-ation areas was 180.54/100,000 (224.20/100,000 in males and 135.85/100,000 in females),age-standardized umortality rates by Chinese standard population (ASMRC) and by world standard population (ASMRW) were 85.06/100,000 and 115.65/100,000,and the cumulative incidence rate (0-74 age years old) was 12.94%.The cancer mortality and ASMRC were 181

  16. SURVIVAL ANALYSIS OF CANCER CASES FROM QIDONG CANCER REGISTRY

    Institute of Scientific and Technical Information of China (English)

    CHEN Jian-guo; Sankaranarayanan R; SHEN Zhuo-cai; Black RJ; YAO Hong-yu; LI Wen-guang; Parkin DM

    1999-01-01

    Objective: 16,922 patients with cancers from 15 sites of Qidong population-based cancer registry in the period of 1982-1991 were analyzed for evaluation of cancer survival as well as different cancer control measures.Methods: Observed survival rate (OS) was computed by the Kaplan-Meier method using EGRET statistical software package. Relative survival (RS) which is the ratio of the OS to the expected rate was calculated by using Qidong life table with respect to sex, age and calendar period of observation. Results: The five-year OS for the 5 leading sites of cancers, liver, stomach, lung,oesophagus, and rectum were 1.8%, 11.6%, 3.0% 3.3%,and 19.9%, respectively. The five-year RS for the 5 sites were 1.9%, 14.0%, 3.6%, 4.2%, and 23.7%, respectively,in which, 1.7%, 14.8%, 3.4%, 4.2%, and 26.0% for males, and 2.7%, 12.7%, 4.1%, 4.0%, and 22.0% for females, respectively. Female patients with breast cancer and cervix cancer had 5-year RS of 54.6% and 33.0%.Conclusion: Cancer survival rates for all sites are poor,in which that of the liver is the lowest, while that of the breast, the highest. The survivals of cancers for all sites,especially for breast, cervix, and leukemia are seen to be lower than those of European countries except for oesophagus, pancreas and lung cancer which do not achieve improved survival both in developing and developed countries. There will be a long way to improve the total cancer survival, as well as the cancer treatment in the developing countries.

  17. Report of Incidence and Mortality in China Cancer Registries, 2008

    Institute of Scientific and Technical Information of China (English)

    Wan-qing Chen; Rong-shou Zheng; Si-wei Zhang; Ni Li; Ping Zhao; Guang-lin Li; Liang-you Wu; Jie He

    2012-01-01

    Objective:Annual cancer incidence and mortality in 2008 were provided by National Central Cancer Registry in China,which data were collected from population-based cancer registries in 2011.Methods:There were 56 registries submitted their data in 2008.After checking and evaluating the data quality,total 41 registries' data were accepted and pooled for analysis.Incidence and mortality rates by area (urban or rural areas) were assessed,as well as the age-and sex-specific rates,age-standardized rates,proportions and cumulative rate.Results:The coverage population of the 41 registries was 66,138,784 with 52,158,495 in urban areas and 13,980,289 in rural areas.There were 197,833 new cancer cases and 122,136 deaths in cancer with mortality to incidence ratio of 0.62.The morphological verified rate was 69.33%,and 2.23% of cases were identified by death certificate only.The crude cancer incidence rate in all areas was 299.12/100,000 (330.16/100,000 in male and 267.56/100,000 in female) and the age-standardized incidence rates by Chinese standard population (ASIRC) and world standard population (ASIRW) were 148.75/100,000 and 194.99/100,000,respectively.The cumulative incidence rate (0-74 years old) was of 22.27%.The crude incidence rate in urban areas was higher than that in rural areas.However,after adjusted by age,the incidence rate in urban was lower than that in rural.The crude cancer mortality was 184.67/100,000 (228.14/100,000 in male and 140.48/100,000 in female),and the age-standardized mortality rates by Chinese standard population (ASMRC) and by world population were 84.36/100,000 and 114.32/100,000,respectively.The cumulative mortality rate (0-74 years old) was of 12.89%.Age-adjusted mortality rates in urban areas were lower than that in rural areas.The most common cancer sites were lung,stomach,colon-rectum,liver,esophagus,pancreas,brain,lymphoma,breast and cervix which accounted for 75% of all cancer incidence.Lung cancer was the leading cause of

  18. Clinical Cancer Registries - Are They Up for Health Services Research?

    Science.gov (United States)

    Pobiruchin, Monika; Bochum, Sylvia; Martens, Uwe M; Schramm, Wendelin

    2016-01-01

    Clinical cancer registries are a valuable data source for health services research (HSR). HSR is in need of high quality routine care data for its evaluations. However, the secondary use of routine data - such as documented cancer cases in a disease registry - poses new challenges in terms of data quality, IT-management, documentation processes and data privacy. In the clinical cancer registry Heilbronn-Franken, real-world data from the Giessen Tumor Documentation System (GTDS) was utilized for analyses of patients' disease processes and guideline adherence in follow-up care. A process was developed to map disease state definitions to fields of the GTDS database and extract patients' disease progress information. Thus, the disease process of sub-cohorts could be compared to each other, e.g., comparison of disease free survival of HER2 (human epidermal growth factor receptor 2)-positive and -negative women who were treated with Trastuzumab, a targeted therapy applied in breast cancer. In principle, such comparisons are feasible and of great value for HSR as they depict a routine care setting of a diverse patient cohort. Yet, local documentation practice, missing flow of information from external health care providers or small sub-cohorts impede the analyses of clinical cancer registries data bases and usage for HSR. PMID:27577380

  19. Oral cancer in Libya and development of regional oral cancer registries: A review

    OpenAIRE

    BenNasir, E.; El Mistiri, M.; Mcgowan, R.; Katz, R.V.

    2015-01-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendation...

  20. A Suitable Approach to Estimate Cancer Incidence in Area without Cancer Registry

    OpenAIRE

    Laurent Remontet; Nadine Bossard; Zoé Uhry; Stéphanie Polazzi; Anne-Marie Schott-Petelaz; Jean Iwaz; Frédéric Gomez; Béatrice Trombert; Frédéric Olive; Nicolas Mitton; Marc Colonna

    2011-01-01

    Objective. Use of cancer cases from registries and PMSI claims database to estimate Département-specific incidence of four major cancers. Methods. Case extraction used principal diagnosis then surgery codes. PMSI cases/registry cases ratios for 2004 were modelled then Département-specific incidence for 2007 estimated using these ratios and 2007 PMSI cases. Results. For 2007, only colon-rectum and breast cancer estimations were satisfactorily validated for infranational incidence not ovary and...

  1. Oral cancer in Libya and development of regional oral cancer registries: A review.

    Science.gov (United States)

    BenNasir, E; El Mistiri, M; McGowan, R; Katz, R V

    2015-10-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people. PMID:26644751

  2. Cancer registries can provide evidence-based data to improve quality of care and prevent cancer deaths

    OpenAIRE

    Bouchardy Magnin, Christine; Rapiti Aylward, Elisabetta; Benhamou, Simone

    2014-01-01

    Today, many countries are increasing their efforts to ensure that all cancer patients receive the best possible care. Population-based cancer registries have adapted their registration to collect additional clinical variables to provide clinicians with unbiased population data on cancer treatment and survival. Taking several examples of epidemiological cancer research performed at the Geneva Cancer Registry, we aim to illustrate how cancer registries oversee the treatment and outcomes of canc...

  3. Hereditary cancer registries improve the care of patients with a genetic predisposition to cancer: contributions from the Dutch Lynch syndrome registry.

    Science.gov (United States)

    Vasen, Hans F A; Velthuizen, Mary E; Kleibeuker, Jan H; Menko, Fred H; Nagengast, Fokke M; Cats, Annemieke; van der Meulen-de Jong, Andrea E; Breuning, Martijn H; Roukema, Anne J; van Leeuwen-Cornelisse, Inge; de Vos Tot Nederveen Cappel, Wouter H; Wijnen, Juul T

    2016-07-01

    The Dutch Hereditary Cancer Registry was established in 1985 with the support of the Ministry of Health (VWS). The aims of the registry are: (1) to promote the identification of families with hereditary cancer, (2) to encourage the participation in surveillance programs of individuals at high risk, (3) to ensure the continuity of lifelong surveillance examinations, and (4) to promote research, in particular the improvement of surveillance protocols. During its early days the registry provided assistance with family investigations and the collection of medical data, and recommended surveillance when a family fulfilled specific diagnostic criteria. Since 2000 the registry has focused on family follow-up, and ensuring the quality of surveillance programs and appropriate clinical management. Since its founding, the registry has identified over 10,000 high-risk individuals with a diverse array of hereditary cancer syndromes. All were encouraged to participate in prevention programmes. The registry has published a number of studies that evaluated the outcome of surveillance protocols for colorectal cancer (CRC) in Lynch syndrome, as well as in familial colorectal cancer. In 2006, evaluation of the effect of registration and colonoscopic surveillance on the mortality rate associated with colorectal cancer (CRC) showed that the policy led to a substantial decrease in the mortality rate associated with CRC. Following discovery of MMR gene defects, the first predictive model that could select families for genetic testing was published by the Leiden group. In addition, over the years the registry has produced many cancer risk studies that have helped to develop appropriate surveillance protocols. Hereditary cancer registries in general, and the Lynch syndrome registry in particular, play an important role in improving the clinical management of affected families. PMID:26973060

  4. Quality of record linkage in a highly automated cancer registry that relies on encrypted identity data

    OpenAIRE

    Schmidtmann, Irene; Sariyar, Murat; Borg, Andreas; Gerold-Ay, Aslihan; Heidinger, Oliver; Hense, Hans-Werner; Krieg, Volker; Hammer, Gaël Paul

    2016-01-01

    Objectives: In the absence of unique ID numbers, cancer and other registries in Germany and elsewhere rely on identity data to link records pertaining to the same patient. These data are often encrypted to ensure privacy. Some record linkage errors unavoidably occur. These errors were quantified for the cancer registry of North Rhine Westphalia which uses encrypted identity data. Methods: A sample of records was drawn from the registry, record linkage information was included. In parallel, pl...

  5. Cancer Incidence in Egypt: Results of the National Population-Based Cancer Registry Program

    OpenAIRE

    Amal S. Ibrahim; Khaled, Hussein M.; Nabiel NH Mikhail; Hoda Baraka; Hossam Kamel

    2014-01-01

    Background. This paper aims to present cancer incidence rates at national and regional level of Egypt, based upon results of National Cancer Registry Program (NCRP). Methods. NCRP stratified Egypt into 3 geographical strata: lower, middle, and upper. One governorate represented each region. Abstractors collected data from medical records of cancer centers, national tertiary care institutions, Health Insurance Organization, Government-Subsidized Treatment Program, and death records. Data ...

  6. Long-term changes of acidifying deposition in Finland (1973-2000)

    International Nuclear Information System (INIS)

    The long-term changes of acidifying deposition in Finland during the period 1973-2000 were studied using bulk deposition data from 19 stations belonging to the national monitoring network. The regional-scale approach (southern, central and northern Finland) was used for trend assessment with respect to implementation of European sulphur (S) emission reduction amendments involving deposition changes prior to (1973-1985) and after (1986-2000) the agreements (S protocols in 1985 and 1994). There were no marked changes in sulphate deposition between the 1970s and 1980s and consistent trends in 1973-1985 were not observed. Deposition of nitrogen (N) compounds, particularly NO3-N, were increasing between the 1970s and 1980s. Deposition of base cations exhibited a slight decline throughout the 1970s and 1980s. Decrease of calcium and magnesium deposition without corresponding decrease in sulphate resulted in increased acidifying potential (AP) of deposition. Due to successful implementation of S (and N) emission reduction measures, sulphate deposition has decreased substantially (30% in northern and up to 60% in southern Finland) since the late 1980s. N deposition also decreased, but less than S deposition. Base cation deposition has also declined substantially, but this decline appeared to be leveling off during the 1990s, accounting for the decrease of AP in deposition. The observed deposition pattern is in agreement with the on-going biochemical recovery of acidified small Finnish lakes taking place since the early 1990s. - Acidic deposition has declined and recovery has taken place in acidified lakes

  7. Incidence of primary breast cancer in Iran: Ten-year national cancer registry data report.

    Science.gov (United States)

    Jazayeri, Seyed Behzad; Saadat, Soheil; Ramezani, Rashid; Kaviani, Ahmad

    2015-08-01

    Breast cancer is the leading type of malignancy and the leading cause of cancer-related deaths in women worldwide. The screening programs and advances in the treatment of patients with breast cancer have led to an increase in overall survival. Cancer registry systems play an important role in providing basic data for research and the monitoring of the cancer status. In this study, the results of the 10-year national cancer registry (NCR) of Iran in breast cancer are reviewed. NCR database records were searched for primary breast cancer records according to ICD-O-3 coding and the cases were reviewed. A total of 52,068 cases were found with the coding of primary breast cancer. Females constituted 97.1% of the cases. Breast cancer was the leading type of cancer in Iranian females, accounting for 24.6% of all cancers. The mean age of the women with breast cancer was 49.6 years (95%CI 49.5-49.6). Most of the cases (95.7%) were registered as having invasive pathologies (behavior code 3). The most common morphology of primary breast cancer was invasive ductal carcinoma (ICD-O 8500/3) followed by invasive lobular carcinoma (ICD-O 8520/3) with relative frequencies of 77.8% and 5.2%, respectively. The average annual crude incidence of primary breast cancer in females was 22.6 (95%CI 22.1-23.1) per 100,000 females, with an age-standardized rate (ASR) of 27.4 (95%CI 22.5-35.9). There were no data on survival, staging or immunohistochemical marker(s) of the breast-cancer-registered cases. The incidence of breast cancer in Iran is lower than in low-middle-income neighboring countries. The NCR data registry of breast cancer is not accurate in monitoring the effect of screening programs or determining the current status of breast cancer in Iran. Screening programs of breast cancer in Iran have failed to enhance the detection of the patients with in situ lesion detection. A quality breast cancer registry and a screening program for breast cancer are both needed. PMID:26070507

  8. Ekonomický a institucionální vývoj Severní Koreje v letech 1973-2000

    OpenAIRE

    Večerka, Jakub

    2015-01-01

    This bachelor thesis deals with centrally planned economy and economic and institutional development of North Korea between the years 1973-2000. The first part of this thesis explains the elemental features of centrally planned economy as well as its advantages and disadvantages. The second part of this thesis aims to briefly describe the development and key institutions of North Korea, to examine international trade of the DPRK between 1973-2000 and to outline North Korea's dependence on Sov...

  9. Roles of cancer registries in enhancing oncology drug access in the Asia-Pacific region.

    Science.gov (United States)

    Soon, Swee-Sung; Lim, Hwee-Yong; Lopes, Gilberto; Ahn, Jeonghoon; Hu, Min; Ibrahim, Hishamshah Mohd; Jha, Anand; Ko, Bor-Sheng; Lee, Pak Wai; Macdonell, Diana; Sirachainan, Ekaphop; Wee, Hwee-Lin

    2013-01-01

    Cancer registries help to establish and maintain cancer incidence reporting systems, serve as a resource for investigation of cancer and its causes, and provide information for planning and evaluation of preventive and control programs. However, their wider role in directly enhancing oncology drug access has not been fully explored. We examined the value of cancer registries in oncology drug access in the Asia-Pacific region on three levels: (1) specific registry variable types; (2) macroscopic strategies on the national level; and (3) a regional cancer registry network. Using literature search and proceedings from an expert forum, this paper covers recent cancer registry developments in eight economies in the Asia-Pacific region - Australia, China, Hong Kong, Malaysia, Singapore, South Korea, Taiwan, and Thailand - and the ways they can contribute to oncology drug access. Specific registry variables relating to demographics, tumor characteristics, initial treatment plans, prognostic markers, risk factors, and mortality help to anticipate drug needs, identify high-priority research area and design access programs. On a national level, linking registry data with clinical, drug safety, financial, or drug utilization databases allows analyses of associations between utilization and outcomes. Concurrent efforts should also be channeled into developing and implementing data integrity and stewardship policies, and providing clear avenues to make data available. Less mature registry systems can employ modeling techniques and ad-hoc surveys while increasing coverage. Beyond local settings, a cancer registry network for the Asia-Pacific region would offer cross-learning and research opportunities that can exert leverage through the experiences and capabilities of a highly diverse region. PMID:23725106

  10. Cancer Incidence - Surveillance, Epidemiology, and End Results (SEER) Registries Limited-Use

    Data.gov (United States)

    U.S. Department of Health & Human Services — SEER Limited-Use cancer incidence data with associated population data. Geographic areas available are county and SEER registry. The Surveillance, Epidemiology, and...

  11. The role of the hospital registry in achieving outcome benchmarks in cancer care.

    Science.gov (United States)

    Greene, Frederick L; Gilkerson, Sharon; Tedder, Paige; Smith, Kathy

    2009-06-15

    The hospital registry is a valuable tool for evaluating quality benchmarks in cancer care. As payment for performance standards are adopted, the registry will assume a more dynamic and economically important role in the hospital setting. At Carolinas Medical Center, the registry has been a key instrument in the comparison of state and national benchmarks and for program improvement in meeting standards in the care of breast and colon cancer. One of the significant successes of the American College of Surgeons Commission on Cancer (CoC) Hospital Approvals Program is the support of hospital registries, especially in small and midsized community hospitals throughout the United States. To become a member of the Hospital Approvals Program, a registry must be staffed appropriately and include analytic data for patients who have their primary diagnosis or treatment at the facility 1. The current challenge for most hospitals is to prove that the registry has specific worth when many facets of care are not compensated. Unfortunately a small number of hospitals have disbanded their registries because of the short-sighted decision that the registry and its personnel are a drain on the hospital system and do not generate revenue. In the present era of meeting benchmarks for care as a prelude to being paid by third party and governmental agencies 2,3, a primary argument is that the registry can be revenue-enhancing by quantifying specific outcomes in cancer care. Without having appropriate registry and abstract capability, the hospital leadership cannot measure the specific outcome benchmarks required in the era of "pay for performance" or "pay for participation". PMID:19466739

  12. Age distribution, polyps and rectal cancer in the Egyptian population-based cancer registry

    Institute of Scientific and Technical Information of China (English)

    Darlene Veruttipong; Amr S Soliman; Samuel F Gilbert; Taylor S Blachley; Ahmed Hablas; Mohamed Ramadan; Laura S Rozek; Ibrahim A Seifeldin

    2012-01-01

    AIM:To describe the clinical and epidemiologic profiles of the disease and to compare the findings with those generated from the previous hospital-based studies.METHODS:The Gharbiah cancer registry is the only population-based cancer registry in Egypt since 1998.We analyzed the data of all colorectal cancer patients included in the registry for the period of 1999-2007.All medical records of the 1364 patients diagnosed in Gharbiah during the study period were retrieved and the following information abstracted:age,residence,diagnosis date,grade,stage,topology,clinical characteristics,and histology variables.Egyptian census data for 1996 and 2006 were used to provide the general population's statistics on age,sex,residence and other related demographic factors.In addition to age-and sex-specific incidence rate analyses,we analyze the data to explore the incidence distribution by rural-urban differences among the 8 districts of the province.We also compared the incidence rates of Gharbiah to the rates of the Surveillance Epidemiology and End Results (SEER) data of the United States.RESULTS:Over the 9 year-period,1364 colorectal cancer cases were included.The disease incidence under age 40 years was relatively high (1.3/105) while the incidence in the age groups 40 and over was very low (12.0/105,19.4/105 and 21.2/105 in the age groups 40-59 years,60-69 years and > 70 years,respectively).The vast majority of tumors (97.2%) had no polyps and 37.2% of the patients presented with primary lesions in the rectum.Colorectal cancer was more common in patients from urban (55%) than rural (45%) areas.Regional differences in colon and rectal cancer incidence in the 8 districts of the study province may refleet different etiologic patterns in this population.The registry data of Egypt shows a slightly higher incidence of colorectal cancer than the United States in subjects under age 40 years.The results also shows significantly lower incidence of colorectal cancer in

  13. Developing National Cancer Registration in Developing Countries- Case Study of the Nigerian National System of Cancer Registries

    Directory of Open Access Journals (Sweden)

    Elima E Jedy-Agba

    2015-07-01

    Full Text Available The epidemiologic transition in sub-Saharan Africa (SSA has given rise to a concomitant increase in the incidence of non-communicable diseases including cancers. Worldwide, cancer registries have been shown to be critical for the determination of cancer burden, conduct of research, and in the planning and implementation of cancer control measures. Cancer registration though vital is often neglected in SSA owing to competing demands for resources for healthcare.We report the implementation of a system for representative nation-wide cancer registration in Nigeria - the Nigerian National System of Cancer Registries (NSCR. The NSCR coordinates the activities of cancer registries in Nigeria, strengthens existing registries, establishes new registries, complies and analyses data, and makes these freely available to researchers and policy makers. We highlight the key challenges encountered in implementing this strategy and how they were overcome. This report serves as a guide for other low and middle income countries (LMIC wishing to expand cancer registration coverage in their countries and highlights the training, mentoring, scientific and logistic support, and advocacy that are crucial to sustaining cancer registration programs in LMIC

  14. A Suitable Approach to Estimate Cancer Incidence in Area without Cancer Registry

    Science.gov (United States)

    Mitton, Nicolas; Colonna, Marc; Trombert, Béatrice; Olive, Frédéric; Gomez, Frédéric; Iwaz, Jean; Polazzi, Stéphanie; Schott-Petelaz, Anne-Marie; Uhry, Zoé; Bossard, Nadine; Remontet, Laurent

    2011-01-01

    Objective. Use of cancer cases from registries and PMSI claims database to estimate Département-specific incidence of four major cancers. Methods. Case extraction used principal diagnosis then surgery codes. PMSI cases/registry cases ratios for 2004 were modelled then Département-specific incidence for 2007 estimated using these ratios and 2007 PMSI cases. Results. For 2007, only colon-rectum and breast cancer estimations were satisfactorily validated for infranational incidence not ovary and kidney cancers. For breast, the estimated national incidence was 50,578 cases and the incidence rate 98.6 cases per 100,000 person per year. For colon-rectum, incidence was 21,172 in men versus 18,327 in women and the incidence rate 38 per 100,000 versus 24.8. For ovary, the estimated incidence was 4,637 and the rate 8.6 per 100,000. For kidney, incidence was 6,775 in men versus 3,273 in women and the rate 13.3 per 100.000 versus 5.2. Conclusion. Incidence estimation using PMSI patient identifiers proved encouraging though still dependent on the assumption of uniform cancer treatments and coding. PMID:21527984

  15. Comprehensive capture of cutaneous melanoma by the Ontario Cancer Registry: validation study using community pathology reports.

    Science.gov (United States)

    Tran, Jennifer M; Schwartz, Rodrigo; Fung, Kinwah; Rochon, Paula; Chan, An-Wen

    2016-01-01

    Melanoma is often managed outside hospital settings, creating the potential for underreporting to cancer registries. To our knowledge, completeness of melanoma capture in cancer registries has not been assessed using external data sources since the 1980s. We evaluated the melanoma capture rate from 1993 to 2009 in a provincial cancer registry. We identified all melanoma diagnoses in pathology reports from a major community laboratory in Ontario, Canada. Pathologically confirmed diagnoses were linked to Ontario Cancer Registry (OCR) records using health insurance numbers. We calculated capture rates as the proportion of patients with melanoma confirmed by a pathology report, with a corresponding melanoma diagnosis in OCR. OCR captured 3,798 of 4,275 (88.8, 95 % confidence interval: 87.9, 89.8 %) invasive melanoma diagnoses over the 17-year period. Annual capture rates of 94 % or higher were found for over half the study period. Among all 29,133 melanoma diagnoses in OCR, 27.6 % were registered based on a pathology report alone, compared with 3.4 % for non-cutaneous malignancies. This suggests that comprehensive capture of melanoma cases by a provincial cancer registry is achievable using source data from community laboratories. There is a need for ongoing validation to ensure data remain accurate and complete to reliably inform clinical care, research, and policy. PMID:26537120

  16. Linking Tumor Registry and Medicaid Claims to Evaluate Cancer Care Delivery

    OpenAIRE

    Schrag, Deborah; Virnig, Beth A.; Warren, Joan L.

    2009-01-01

    The utility of Medicaid claims for studying cancer care is not known. Our objective was to evaluate how well Medicaid claims capture diagnostic and treatment information recorded by the California Cancer Registry (CCR). We compared cancer treatment from Medicaid claims with CCR data, using 1988-2000 cases matched with 1997-1998 Medicaid enrollment data. Medicaid claims corroborated diagnoses for 73 percent of breast and 68 percent of colorectal cancers in CCR. Medicaid claims confirmed surger...

  17. [Nationwide statements from regional data: methods of the Center for Cancer Registry Data].

    Science.gov (United States)

    Kraywinkel, K; Barnes, B; Dahm, S; Haberland, J; Nennecke, A; Stabenow, R

    2014-01-01

    Despite having achieved nationwide registry coverage in addition to substantial improvements in data on the epidemiology of cancer in Germany, the Centre for Cancer Registry Data continues to estimate national statistics on incidence, survival, and prevalence instead of calculating these directly from available data. The methods used for evaluations are based initially on estimates of registration completeness or, for survival analyses, an assessment of the quality of follow-up data. The completeness of incident case registration is estimated on the basis of the mortality/incidence procedure, which assumes a largely constant relationship between the mortality and incidence of a cancer type among people of the same age and sex across federal states. Inclusion criteria for consideration of registry data in national survival analyses are less than 15% of death certificate only (DCO) cases and plausible survival for patients with pancreatic cancer or metastatic lung cancer. Of the 477,300 incident cancer cases estimated for 2010, 429,900 were reported by the cancer registries (90%), and ten federal states contributed data to national survival estimates. PMID:24357167

  18. Cancer incidence in Arkhangelskaja Oblast in northwestern Russia. The Arkhangelsk Cancer Registry

    Directory of Open Access Journals (Sweden)

    Tkatsjov Anatolij V

    2005-07-01

    Full Text Available Abstract Background Data concerning incidence and prevalence of cancer in the different regions of Russia have traditionally not been provided on a basis that facilitated comparison with data from countries in western parts of Europe. The oncological hospital in Arkhangelsk, in co-operation with Universitetet i Tromsø (Norway, has established a population based cancer registry for Arkhangelskaja Oblast (AO. AO is an administrative unit with 1.3 million inhabitants in northwestern Russia. The aim of this investigation was to assess the content and quality of the AO cancer registry (AKR, and to present the site-specific cancer-incidence rates in AO in the period 1993–2001. Methods The population in this study consisted of all individuals registered as residents of AO. All new cancer cases in the period 1993 – 2001, registered the AKR, were included in the study (ICD-10: C00-C95, except for C77-78. The annual gender and age-group-specific population figures were obtained from the AO statistics office. Results A total of 34 697 cases of primary cancers were included. The age-adjusted (world standard incidence rate for all sites combined was 164/100 000 for women and 281/100 000 for men. The highest incidence was for cancer of the trachea, bronchus and lung (16.3% of all cases, whereof 88.6 % of the cases were among men. Among women, cancer of the breast constituted 15.9 percent of all cases. The age-adjusted incidences of the most frequent cancer sites among men were: lung (77.4/100 000; stomach (45.9; rectum (13.4; oesophagus (13.0; colon (12.2; bladder (11.6; and prostate cancer (11.1. Among women they were: breast (28.5; stomach (19.7; colon (12.2; and ovary cancer (9.0. Conclusion Our findings confirm and strengthen the indication that the incidences of stomach, larynx, liver, pancreas, prostate, colon, bladder and melanoma cancer are quite different in male populations in Russia compared to many other European countries. Among women, most

  19. Accuracy of Self-Reported Breast Cancer Information among Women from the Ontario Site of the Breast Cancer Family Registry

    OpenAIRE

    Andriana Barisic; Gord Glendon; Nayana Weerasooriya; Andrulis, Irene L.; Knight, Julia A.

    2012-01-01

    Obtaining complete medical record information can be challenging and expensive in breast cancer studies. The current literature is limited with respect to the accuracy of self-report and factors that may influence this. We assessed the agreement between self-reported and medical record breast cancer information among women from the Ontario site of the Breast Cancer Family Registry. Women aged 20–69 years diagnosed with incident breast cancer 1996–1998 were identified from the Ontario Cancer R...

  20. Recruitment of representative samples for low incidence cancer populations: Do registries deliver?

    Directory of Open Access Journals (Sweden)

    Sanson-Fisher Rob

    2011-01-01

    Full Text Available Abstract Background Recruiting large and representative samples of adolescent and young adult (AYA cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Methods Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. Results The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56% received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8% refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32 completed the questionnaire. Conclusions Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered.

  1. Cancer Incidence and Mortality in Ardabil: Report of an Ongoing Population-Based Cancer Registry in Iran, 2004-2006

    Directory of Open Access Journals (Sweden)

    M Babaei

    2009-12-01

    Full Text Available "nBackground: Ardabil cancer registry is the first population-based cancer registry in Iran that was established in 2000. The first report from this registry revealed that Ardabil has one of the highest rate of gastric cardia cancer and the lowest rate of cer­vical cancer in the world. We aim to update the cancer incidence in this area by the second follow up report from this registry."nMethod: Data on all newly diagnosed cancer cases between 2004 and 2006 were actively collected. CanReg4 software was used for data entry and the data of cancer-related death were obtained from the comprehensive death registry system."nResults: More than 4300 new cases were registered during 3 years. Diagnosis of cancer was based on histopathology in 69%, clinical investigation 8%, clinical only 5%, and Death Certificate Only (DCO in 18% of cases. In terms of age-stan­dardized rate (/100,000, the five leading cancers in men (excluding skin cancer were stomach (51.8, esophagus (19.5, blad­der (13.1, lung and bronchus (10.8, and colorectal (9.6; in women, they were stomach (24.9, esophagus (19.7, breast (11.9, colon and rectum (7.4, and brain tumors (6.9. According to death registration data, upper gastrointestinal can­cers constituted more than 43% of cancer-related death in Ardabil."nConclusions: The ASR for gastric cancer is among the highest rate for this cancer in male and female in the world. Most of the cancers, especially in female, have a significant increase compared to previous report from Ardabil. This is most likely due to the change in the registration practice.  

  2. The Spatial Distribution of Cancer Incidence in Fars Province: A GIS-Based Analysis of Cancer Registry Data

    OpenAIRE

    Ali Goli; Mahbobeh Oroei; Mehdi Jalalpour; Hossein Faramarzi; Mehrdad Askarian

    2013-01-01

    Background: Cancer is a major health problem in the developing countries. Variations of its incidence rate among geographical areas are due to various contributing factors. This study was performed to assess the spatial patterns of cancer incidence in the Fars Province, based on cancer registry data and to determine geographical clusters. Methods: In this cross sectional study, the new cases of cancer were recorded from 2001 to 2009. Crude incidence rate was estimated based on age groups ...

  3. National Cancer Patient Registry--a patient registry/clinical database to evaluate the health outcomes of patients undergoing treatment for cancers in Malaysia.

    Science.gov (United States)

    Lim, G C C; Azura, D

    2008-09-01

    Cancer burden in Malaysia is increasing. Although there have been improvements in cancer treatment, these new therapies may potentially cause an exponential increase in the cost of cancer treatment. Therefore, justification for the use of these treatments is mandated. Availability of local data will enable us to evaluate and compare the outcome of our patients. This will help to support our clinical decision making and local policy, improve access to treatment and improve the provision and delivery of oncology services in Malaysia. The National Cancer Patient Registry was proposed as a database for cancer patients who seek treatment in Malaysia. It will be a valuable tool to provide timely and robust data on the actual setting in oncology practice, safety and cost effectiveness of treatment and most importantly the outcome of these patients. PMID:19230247

  4. Burden of cancer in Malawi; common types, incidence and trends: National population-based cancer registry

    Directory of Open Access Journals (Sweden)

    Msyamboza Kelias

    2012-03-01

    Full Text Available Abstract Background Cancer is a leading cause of morbidity and mortality worldwide with a majority of cases and deaths occurring in developing countries. While cancer of the lung, breast, colorectum, stomach and prostate are the most common types of cancer globally, in east and southern Africa these are less common and comprehensive data to inform policies are lacking. Methods Nationwide cancer registry was conducted between September and October 2010 in Malawi. New cancer cases registered from 2007 to 2010 were identified from hospital and clinic registers of 81 out of 84 health facilities providing cancer diagnosis, treatment or palliative care services. Demographic and cancer data were extracted from registers and case notes using a standard form. Results A total of 18,946 new cases of cancer were registered in Malawi from 2007-2010. Of these 55.9% were females, 7.2% were children aged less than 15 years, 76.5% were adults aged 15-59 years and 16.4% were elderly aged 60 years or more. Only 17.9% of the cases had histologically verified diagnosis, 33.2% were diagnosed clinically and 49.6% based on clinical and some investigations. Amongst females, cancer of the cervix was the commonest accounting for 45.4% of all cases followed by Kaposi sarcoma (21.1%, cancer of the oesophagus (8.2%, breast (4.6% and non-Hodgkin lymphoma (4.1%. In males, Kaposi sarcoma was the most frequent (50.7% then cancer of oesophagus (16.9%, non-Hodgkin lymphoma (7.8, prostate (4.0% and urinary bladder (3.7%. Age-standardised incidence rate per 100,000 population for all types of cancer in males increased from 31 in 1999-2002 to 56 in 2007-2010. In females it increased from 29 to 69. Kaposi sarcoma and cancer of the oesophagus, cervical cancer and Kaposi sarcoma were the main causes for the increased incidence in males and females respectively. It was estimated that, annually at least 8,151 new cases of cancer (all types occur in Malawi. Conclusions This study provided

  5. A breast cancer clinical registry in an Italian comprehensive cancer center: an instrument for descriptive, clinical, and experimental research.

    Science.gov (United States)

    Baili, Paolo; Torresani, Michele; Agresti, Roberto; Rosito, Giuseppe; Daidone, Maria Grazia; Veneroni, Silvia; Cavallo, Ilaria; Funaro, Francesco; Giunco, Marco; Turco, Alberto; Amash, Hade; Scavo, Antonio; Minicozzi, Pamela; Bella, Francesca; Meneghini, Elisabetta; Sant, Milena

    2015-01-01

    In clinical research, many potentially useful variables are available via the routine activity of cancer center-based clinical registries (CCCR). We present the experience of the breast cancer clinical registry at Fondazione IRCCS "Istituto Nazionale dei Tumori" to give an example of how a CCCR can be planned, implemented, and used. Five criteria were taken into consideration while planning our CCCR: (a) available clinical and administrative databases ought to be exploited to the maximum extent; (b) open source software should be used; (c) a Web-based interface must be designed; (d) CCCR data must be compatible with population-based cancer registry data; (e) CCCR must be an open system, able to be connected with other data repositories. The amount of work needed for the implementation of a CCCR is inversely linked with the amount of available coded data: the fewer data are available in the input databases as coded variables, the more work will be necessary, for information technology staff, text mining analysis, and registrars (for collecting data from clinical records). A cancer registry in a comprehensive cancer center can be used for several research aspects, such as estimate of the number of cases needed for clinical studies, assessment of biobank specimens with specific characteristics, evaluation of clinical practice and adhesion to clinical guidelines, comparative studies between clinical and population sets of patients, studies on cancer prognosis, and studies on cancer survivorship. PMID:25953447

  6. Epidemiology of Breast Cancer among Bahraini Women; Data from the Bahrain Cancer Registry

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    Randah R. Hamadeh

    2014-05-01

    Full Text Available Objectives: The aim of this study was to describe the epidemiology of breast cancer among the Bahraini female population in the years 2000‒2010 and examine its health policy implications. Methods: All breast cancer cases in the Bahrain Cancer Registry from 1st January 2000 to 31st December 2010 were included. Results: There were 1,005 cases, 12.7% of which were detected by screening. The overall mean age at diagnosis was 50.9 years (95% confidence interval 50.1–51.6. The age-standardised incidence rate declined from 58.2 per 100,000 in 2000 to 44.4 per 100,000 in 2010. The majority of cases were infiltrating ductal carcinoma (76.9%. Of the registered cases, 44.1% and 48.1% had an unknown grade and stage, respectively. The five-year survival rate was 63 ± 2%. Conclusion: The low percentage of cases detected by screening merits further evaluation of Bahrain’s screening programme. More effort should be made to reduce the proportion of unknown stage and grade breast cancers. Future research has to be directed towards understanding the reasons for Bahrain having the highest incidence rate of breast cancer in the Gulf Cooperation Council countries.

  7. Increased Incidence of Early Onset Colorectal Cancer in Arizona: A Comprehensive 15-year Analysis of the Arizona Cancer Registry

    Science.gov (United States)

    Aziz, Hassan; Pandit, Viraj; DiGiovanni, Ryan M.; Ohlson, Eric; Gruessner, Angelika C.; Jandova, Jana; Nfonsam, Valentine N.

    2016-01-01

    Introduction The aim of this study was to investigate and analyze the incidence of early-onset colorectal cancer in Arizona, using the Arizona Cancer Registry. Methods We performed a retrospective analysis of patients with colorectal cancer reported in the Arizona Cancer Registry from 1995-2010. Outcome measure: incidence of CRC in patients younger than 50 years. Results 39,623 cases of colorectal cancer were reported to the Arizona Cancer Registry during a period of 15 years. Overall, there was a 17% decrease in the incidence of CRC. However, there was a 23% increase in incidence among patients in the age group 10-50. During the same time period, 15% and 41% increase in the incidence of colon and rectal cancer was observed, respectively. The most significant increase (102%) in overall CRC incidence was seen in the age group 10-29. The highest increase (110%) in incidence of colon cancer was observed in the same age group, while the most significant increase in incidence rates (225%) of rectal cancer was seen in the age group 30-34. Conclusion Although there is an overall decrease in incidence of colorectal cancer in Arizona, alarming increase in incidence of early-onset CRC was observed; mirroring the national trends.

  8. Distinct breast cancer characteristics between screen- and self-detected breast cancers recorded in the Japanese Breast Cancer Registry.

    Science.gov (United States)

    Iwamoto, Takayuki; Kumamaru, Hiraku; Miyata, Hiroaki; Tomotaki, Ai; Niikura, Naoki; Kawai, Masaaki; Anan, Keisei; Hayashi, Naoki; Masuda, Shinobu; Tsugawa, Koichiro; Aogi, Kenjiro; Ishida, Takanori; Masuoka, Hideji; Iijima, Kotaro; Matsuoka, Junji; Doihara, Hiroyoshi; Kinoshita, Takayuki; Nakamura, Seigo; Tokuda, Yutaka

    2016-04-01

    The rate of breast cancer screening for women of all ages in Japan is increasing. However, little is known about the biological differences between screen- and self-detected tumors. We used data from the Japanese Breast Cancer Registry (JBCR), a nationwide registry of newly diagnosed breast cancer cases in Japan, to investigate patients diagnosed between January 1, 2004 and December 31, 2011. We compared the clinicopathological features of tumors and assessed yearly trends regarding the proportion of screen-detected cases during the study period. We found that 31.8 % (65,358/205,544) of cancers were detected by screening. Asymptomatic tumors detected by screening (asymptomatic) were more likely to have favorable prognostic features than those that were self-detected (ductal carcinoma in situ [DCIS]: 19.8 versus 4.1 %, node-negative: 77.0 versus 61.6 %, and estrogen receptor-positive [ER+]: 82.0 versus 72.9 %, respectively). All these findings were statistically significant (p DCIS increased from 41.5 to 66.0 % and that of ER+ cancers increased from 23.2 to 39.7 %. This study demonstrated that low-risk tumors, including DCIS, ER+, and lower TNM stage, account for a substantial proportion of clinical screening-detected cancers. The differences in biological characteristics between screen- and self-detected cancers may account in part for the limited efficacy of breast cancer screening programs aimed at improving breast cancer mortality. PMID:27048417

  9. [The (German) Center for Cancer Registry Data (ZfKD) at the Robert Koch Institute (RKI) in Berlin].

    Science.gov (United States)

    Wolf, U; Barnes, B; Bertz, J; Haberland, J; Laudi, A; Stöcker, M; Schönfeld, I; Kraywinkel, K; Kurth, B-M

    2011-11-01

    Cancer represents the second most common cause of death in Germany. The country's federal states operate regional population-based cancer registries that collect and analyze data on cancer patients. This provides an essential basis for describing the cancer burden in the German population. In order to obtain valid and reliable information on cancer incidence at the national level, the Robert Koch Institute (RKI) set up the Federal Cancer Surveillance Unit in 1983 as a central institution for evaluating this cancer registry data. In August 2009, when the Federal Cancer Registry Data Act (BKRG) came into force, the Center for Cancer Registry Data (ZfKD) at the RKI took over the work of the Cancer Surveillance Unit with a broader remit. In the future, it will also regularly publish findings on survival, prevalence, and tumor stage distribution. A newly established record linkage process will help identify multiple submissions from the federal states. Further innovations and new tasks of the ZfKD include expanding an interactive Internet platform and encouraging a more intensive use of cancer registry data for epidemiological research by providing datasets to external scientists. The range of information available to the interested public is also to be expanded. PMID:22015795

  10. Survival of patients with metastatic breast cancer: twenty-year data from two SEER registries

    International Nuclear Information System (INIS)

    Many researchers are interested to know if there are any improvements in recent treatment results for metastatic breast cancer in the community, especially for 10- or 15-year survival. Between 1981 and 1985, 782 and 580 female patients with metastatic breast cancer were extracted respectively from the Connecticut and San Francisco-Oakland registries of the Surveillance, Epidemiology, and End Results (SEER) database. The lognormal statistical method to estimate survival was retrospectively validated since the 15-year cause-specific survival rates could be calculated using the standard life-table actuarial method. Estimated rates were compared to the actuarial data available in 2000. Between 1991 and 1995, further 752 and 632 female patients with metastatic breast cancer were extracted respectively from the Connecticut and San Francisco-Oakland registries. The data were analyzed to estimate the 15-year cause-specific survival rates before the year 2005. The 5-year period (1981–1985) was chosen, and patients were followed as a cohort for an additional 3 years. The estimated 15-year cause-specific survival rates were 7.1% (95% confidence interval, CI, 1.8–12.4) and 9.1% (95% CI, 3.8–14.4) by the lognormal model for the two registries of Connecticut and San Francisco-Oakland respectively. Since the SEER database provides follow-up information to the end of the year 2000, actuarial calculation can be performed to confirm (validate) the estimation. The Kaplan-Meier calculation for the 15-year cause-specific survival rates were 8.3% (95% CI, 5.8–10.8) and 7.0% (95% CI, 4.3–9.7) respectively. Using the 1991–1995 5-year period cohort and followed for an additional 3 years, the 15-year cause-specific survival rates were estimated to be 9.1% (95% CI, 3.8–14.4) and 14.7% (95% CI, 9.8–19.6) for the two registries of Connecticut and San Francisco-Oakland respectively. For the period 1981–1985, the 15-year cause-specific survival for the Connecticut and the San

  11. Muddy Water? Variation in Reporting Receipt of Breast Cancer Radiation Therapy by Population-Based Tumor Registries

    Energy Technology Data Exchange (ETDEWEB)

    Walker, Gary V. [Department of Radiation Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); Giordano, Sharon H. [Department of Breast Medical Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); Williams, Melanie [Texas Cancer Registry, Department of State Health Services, Austin, Texas (United States); Jiang, Jing [Division of Quantitative Sciences, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); Niu, Jiangong [Department of Breast Medical Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); MacKinnon, Jill; Anderson, Patricia; Wohler, Brad [Florida Cancer Data System, University of Miami School of Medicine, Miami, Florida (United States); Sinclair, Amber H.; Boscoe, Francis P.; Schymura, Maria J. [New York State Cancer Registry, New York State Department of Health, Albany, New York (United States); Buchholz, Thomas A. [Department of Radiation Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); Smith, Benjamin D., E-mail: BSmith3@mdanderson.org [Department of Radiation Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States)

    2013-07-15

    Purpose: To evaluate, in the setting of breast cancer, the accuracy of registry radiation therapy (RT) coding compared with the gold standard of Medicare claims. Methods and Materials: Using Surveillance, Epidemiology, and End Results (SEER)–Medicare data, we identified 73,077 patients aged ≥66 years diagnosed with breast cancer in the period 2001-2007. Underascertainment (1 - sensitivity), sensitivity, specificity, κ, and χ{sup 2} were calculated for RT receipt determined by registry data versus claims. Multivariate logistic regression characterized patient, treatment, and geographic factors associated with underascertainment of RT. Findings in the SEER–Medicare registries were compared with three non-SEER registries (Florida, New York, and Texas). Results: In the SEER–Medicare registries, 41.6% (n=30,386) of patients received RT according to registry coding, versus 49.3% (n=36,047) according to Medicare claims (P<.001). Underascertainment of RT was more likely if patients resided in a newer SEER registry (odds ratio [OR] 1.70, 95% confidence interval [CI] 1.60-1.80; P<.001), rural county (OR 1.34, 95% CI 1.21-1.48; P<.001), or if RT was delayed (OR 1.006/day, 95% CI 1.006-1.007; P<.001). Underascertainment of RT receipt in SEER registries was 18.7% (95% CI 18.6-18.8%), compared with 44.3% (95% CI 44.0-44.5%) in non-SEER registries. Conclusions: Population-based tumor registries are highly variable in ascertainment of RT receipt and should be augmented with other data sources when evaluating quality of breast cancer care. Future work should identify opportunities for the radiation oncology community to partner with registries to improve accuracy of treatment data.

  12. Muddy Water? Variation in Reporting Receipt of Breast Cancer Radiation Therapy by Population-Based Tumor Registries

    International Nuclear Information System (INIS)

    Purpose: To evaluate, in the setting of breast cancer, the accuracy of registry radiation therapy (RT) coding compared with the gold standard of Medicare claims. Methods and Materials: Using Surveillance, Epidemiology, and End Results (SEER)–Medicare data, we identified 73,077 patients aged ≥66 years diagnosed with breast cancer in the period 2001-2007. Underascertainment (1 - sensitivity), sensitivity, specificity, κ, and χ2 were calculated for RT receipt determined by registry data versus claims. Multivariate logistic regression characterized patient, treatment, and geographic factors associated with underascertainment of RT. Findings in the SEER–Medicare registries were compared with three non-SEER registries (Florida, New York, and Texas). Results: In the SEER–Medicare registries, 41.6% (n=30,386) of patients received RT according to registry coding, versus 49.3% (n=36,047) according to Medicare claims (P<.001). Underascertainment of RT was more likely if patients resided in a newer SEER registry (odds ratio [OR] 1.70, 95% confidence interval [CI] 1.60-1.80; P<.001), rural county (OR 1.34, 95% CI 1.21-1.48; P<.001), or if RT was delayed (OR 1.006/day, 95% CI 1.006-1.007; P<.001). Underascertainment of RT receipt in SEER registries was 18.7% (95% CI 18.6-18.8%), compared with 44.3% (95% CI 44.0-44.5%) in non-SEER registries. Conclusions: Population-based tumor registries are highly variable in ascertainment of RT receipt and should be augmented with other data sources when evaluating quality of breast cancer care. Future work should identify opportunities for the radiation oncology community to partner with registries to improve accuracy of treatment data

  13. Genetic variations in SMAD7 are associated with colorectal cancer risk in the colon cancer family registry.

    Directory of Open Access Journals (Sweden)

    Xuejuan Jiang

    Full Text Available Recent genome-wide studies identified a risk locus for colorectal cancer at 18q21, which maps to the SMAD7 gene. Our objective was to confirm the association between SMAD7 SNPs and colorectal cancer risk in the multi-center Colon Cancer Family Registry.23 tagging SNPs in the SMAD7 gene were genotyped among 1,592 population-based and 253 clinic-based families. The SNP-colorectal cancer associations were assessed in multivariable conditional logistic regression.Among the population-based families, both SNPs rs12953717 (odds ratio, 1.29; 95% confidence interval, 1.12-1.49, and rs11874392 (odds ratio, 0.80; 95% confidence interval, 0.70-0.92 were associated with risk of colorectal cancer. These associations were similar among the population- and the clinic-based families, though they were significant only among the former. Marginally significant differences in the SNP-colorectal cancer associations were observed by use of nonsteroidal anti-inflammatory drugs, cigarette smoking, body mass index, and history of polyps.SMAD7 SNPs were associated with colorectal cancer risk in the Colon Cancer Family Registry. There was evidence suggesting that the association between rs12953717 and colorectal cancer risk may be modified by factors such as smoking and use of nonsteroidal anti-inflammatory drugs.

  14. Cancer patterns among children of Turkish descent in Germany: A study at the German Childhood Cancer Registry

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    Kaatsch Peter

    2008-05-01

    Full Text Available Abstract Background Cancer risks of migrants might differ from risks of the indigenous population due to differences in socioeconomic status, life style, or genetic factors. The aim of this study was to investigate cancer patterns among children of Turkish descent in Germany. Methods We identified cases with Turkish names (as a proxy of Turkish descent among the 37,259 cases of childhood cancer registered in the German Childhood Cancer Registry (GCCR during 1980–2005. As it is not possible to obtain reference population data for children of Turkish descent, the distribution of cancer diagnoses was compared between cases of Turkish descent and all remaining (mainly German cases in the registry, using proportional cancer incidence ratios (PCIRs. Results The overall distribution of cancer diagnoses was similar in the two groups. The PCIRs in three diagnosis groups were increased for cases of Turkish descent: acute non-lymphocytic leukaemia (PCIR 1.23; CI (95% 1.02–1.47, Hodgkin's disease (1.34; 1.13–1.59 and Non-Hodgkin/Burkitt lymphoma (1.19; 1.02–1.39. Age, sex, and period of diagnosis showed no influence on the distribution of diagnoses. Conclusion No major differences were found in cancer patterns among cases of Turkish descent compared to all other cases in the GCCR. Slightly higher proportions of systemic malignant diseases indicate that analytical studies involving migrants may help investigating the causes of such cancers.

  15. The health disparities cancer collaborative: a case study of practice registry measurement in a quality improvement collaborative

    Directory of Open Access Journals (Sweden)

    Haggstrom David A

    2010-06-01

    Full Text Available Abstract Background Practice registry measurement provides a foundation for quality improvement, but experiences in practice are not widely reported. One setting where practice registry measurement has been implemented is the Health Resources and Services Administration's Health Disparities Cancer Collaborative (HDCC. Methods Using practice registry data from 16 community health centers participating in the HDCC, we determined the completeness of data for screening, follow-up, and treatment measures. We determined the size of the change in cancer care processes that an aggregation of practices has adequate power to detect. We modeled different ways of presenting before/after changes in cancer screening, including count and proportion data at both the individual health center and aggregate collaborative level. Results All participating health centers reported data for cancer screening, but less than a third reported data regarding timely follow-up. For individual cancers, the aggregate HDCC had adequate power to detect a 2 to 3% change in cancer screening, but only had the power to detect a change of 40% or more in the initiation of treatment. Almost every health center (98% improved cancer screening based upon count data, while fewer (77% improved cancer screening based upon proportion data. The aggregate collaborative appeared to increase breast, cervical, and colorectal cancer screening rates by 12%, 15%, and 4%, respectively (p Conclusions The aggregate HDCC registries had both adequate reporting rates and power to detect significant changes in cancer screening, but not follow-up care. Different measures provided different answers about improvements in cancer screening; more definitive evaluation would require validation of the registries. Limits to the implementation and interpretation of practice registry measurement in the HDCC highlight challenges and opportunities for local and aggregate quality improvement activities.

  16. Cardiovascular medication after cancer at a young age in Finland: A nationwide registry linkage study.

    Science.gov (United States)

    Kero, A E; Madanat-Harjuoja, L M; Järvelä, L S; Malila, N; Matomäki, J; Lähteenmäki, P M

    2016-08-01

    Despite improved survival rates, childhood and young adult (YA) cancer survivors face elevated risks for life-threatening morbidities, especially cardiovascular complications. Our nationwide Finnish registry study investigated the purchases of cardiovascular medication from 1993 to 2011 in patients diagnosed with cancer aged below 35 years (N = 8,197) between 1993 and 2004 compared to siblings (N = 29,974) via linkage to the drug purchase registry. The cumulative incidence for purchasing cardiovascular medications was higher in childhood and YA cancer patients compared to siblings with a rising trend over time. After childhood cancer, the highest hazard ratio (HR) was found for purchasing anticoagulants (HR 19.8, 95% CI 8.5-45.9). The HRs for any cardiovascular medication (HR 7.2, 95% CI 5.1-10.1) and cardiac medication (HR 4.8, 95% CI 3.3-6.9) were markedly elevated after childhood cancer as well. Regarding YA cancer patients, the respective HRs were 2.5 (95% CI 2.0-3.2) for anticoagulants, HR 1.7 (95% CI 1.5-1.9) for any cardiovascular medication and HR 1.5 (95% CI 1.3-1.7) for cardiac medication. Among cancer patients, highest HRs for cardiovascular medication were observed after childhood acute lymphoblastic leukemia (ALL) and bone tumors (HR 10.2, 95% CI 6.8-15.5 and HR 7.4, 95% CI 4.0-13.7) and YA ALL and acute myeloid leukemia (HR 5.1, 95% CI 3.5-7.1 and HR 2.8, 95% CI 1.8-4.0). Our study demonstrated increased HRs for purchasing cardiovascular medication after early-onset cancer compared to siblings reflecting elevated cardiovascular morbidity. Thus, the implementation of long-term cardiovascular disease screening is imperative to prevent, detect and adequately treat cardiovascular late effects after cancer at a young age. PMID:26610262

  17. Plasma Protein Carbonyls and Breast Cancer Risk in Sisters Discordant for Breast Cancer from the New York Site of the Breast Cancer Family Registry

    OpenAIRE

    Zipprich, Jennifer; Terry, Mary Beth; Liao, Yuyan; Agrawal, Meenakshi; Gurvich, Irina; Senie, Ruby; Santella, Regina M.

    2009-01-01

    Reactive Oxygen Species (ROS) are important in the pathogenesis of many diseases, including breast cancer. Several population-based case-control studies have demonstrated that various biomarkers of oxidative stress are associated with an increase in breast cancer risk. We selected sisters discordant for breast cancer (n=645) from the New York site of the Breast Cancer Family Registry to explore factors that contribute to variation in plasma protein carbonyls, and to determine whether this bio...

  18. Comparison of Eligibility Criteria Between Protocols, Registries, and Publications of Cancer Clinical Trials.

    Science.gov (United States)

    Zhang, Sheng; Liang, Fei; Li, Wenfeng; Tannock, Ian

    2016-11-01

    Trial registration and public accessibility of appended or published protocols of phase III randomized clinical trials (RCTs) allow comparison of reported research with essential aspects of trial design. We determined how eligibility criteria of participants specified in protocols were described in trial registries and articles of 255 cancer RCTs published in leading journals. The mean proportion of matching eligibility criteria between protocols and publications per trial (the primary endpoint) was 44.0% (95% confidence interval [CI] = 40.8% to 47.3%). Almost all discrepancies in eligibility criteria (96.7%, 95% CI = 96.1% to 97.3%) suggested to readers of articles that a broader study population was included. The mean proportion of matching eligibility criteria between protocols and registries was 72.9% (95% CI = 68.2% to 77.7%, the secondary endpoint). We conclude that there are substantial differences in eligibility criteria between trial protocols, registries and articles. Inaccurate reporting of eligibility criteria may prevent appropriate assessment of the applicability of trial results. PMID:27226519

  19. Cancer incidence in atomic bomb survivors. Part I: Use of the tumor registries in Hiroshima and Nagasaki for incidence studies

    International Nuclear Information System (INIS)

    More than 30 years ago, population-based tumor registries were established in Hiroshima and Nagasaki. This report, the first of a series of papers on cancer incidence, describes methodological aspects of the tumor registries and discusses issues of data quality in the context of the Life Span Study (LSS) cohort, the major atomic bomb survivor population. The tumor registries in Hiroshima and Nagasaki are characterized by active case ascertainment based on abstraction of medical records at area hospitals, augmented by tissue registries operational in the area and a number of clinical and pathological programs undertaken over the years among the atomic bomb survivors. Using conventional measures of quality, the Hiroshima and Nagasaki tumor registries have a death certificate-only (DCO) rate of less than 9%, a mortality/incidence (M/I) ratio of about 50%, and a histological verification (HV) rate in excess of 70%, which place these registries among the best in Japan and comparable to many established registries worldwide. All tumor registry data pertaining to the LSS population were assembled, reviewed and handled with special attention given to the quality and uniformity of data based on standardized procedures. Special studies and monitoring programs were also introduced to evaluate the quality of the tumor incidence data in the LSS. Analyses were performed to examine the quality of incidence data overall and across various substrata used for risk assessment such as age, time and radiation dose groups. No significant associations were found between radiation dose and data quality as measured by various indices. These findings warrant the use of the present tumor registry-based data for studies of cancer incidence in the atomic bomb survivors. 41 refs., 2 figs., 10 tabs

  20. Cancer registries in Europe-going forward is the only option.

    Science.gov (United States)

    Forsea, Ana-Maria

    2016-01-01

    Cancer registries (CR) are the fundamental source of objective cancer data, and thus are indispensable for the evaluation of the cancer burden and for design of effective cancer control plans. Their potential roles spread far beyond epidemiological research, from the exploration of the causes of cancer to health economics, from the evaluation of mass screening programmes to monitoring the quality and outcomes of health services, from addressing the inequalities in access to healthcare, to patients' quality of life analyses, from treatment safety to the development of biomarkers. In Europe, cancer registration is challenged by significant disparities in the quality and coverage of CRs, by insufficient harmonisation and comparability of procedures and data, by heterogeneous legislation that limits CR's abilities for networking, collaboration, and participation in research. These arise against the background of large variations in economical, regulatory, social, and cultural national contexts. Important steps have been taken at European Union (EU)-level in recent years towards mapping and understanding these challenges, identifying best practices and formulating sensible recommendations, and creating the policy frameworks and the tools for cooperation and information sharing. Yet, as cancer has now become the second cause of death in Europe, one third of the population still lacks quality cancer registration, mostly in the regions with lowest resources and health status. It is therefore imperative that the efforts to support the development of CRs continue, and that the wealth of knowledge and vision acquired in this area is transformed into action. PMID:27350787

  1. Human papillomavirus genotype prevalence in invasive penile cancers from a registry-based United States population

    Directory of Open Access Journals (Sweden)

    BrendaYHernandez

    2014-02-01

    Full Text Available Background. Human papillomavirus (HPV is estimated to play an etiologic role in 40%-50% of penile cancers worldwide. Estimates of HPV prevalence in U.S. penile cancer cases are limited. Methods. HPV DNA was evaluated in tumor tissue from 79 invasive penile cancer patients diagnosed in 1998-2005 within the catchment areas of 7 U.S. cancer registries. HPV was genotyped using PCR-based Linear Array and INNO-LiPA assays and compared by demographic, clinical, and pathologic characteristics and survival. Histological classification was also obtained by independent pathology review. Results. HPV DNA was present in 50 of 79 (63% of invasive penile cancer cases. Sixteen viral genotypes were detected. HPV 16, found in 46% (36/79 of all cases (72% of HPV-positive cases was the most prevalent genotype followed equally by HPV 18, 33, and 45, which each comprised 5% of all cases. Multiple genotypes were detected in 18% of viral positive cases. HPV prevalence did not significantly vary by age, race/ethnicity, population size of geographic region, cancer stage, histology, grade, penile subsite, or prior cancer history. Penile cases diagnosed in more recent years were more likely to be HPV positive. Overall survival did not significantly vary by HPV status. Conclusions. The relatively high prevalence of HPV in our study population provides limited evidence of a more prominent and, possibly, increasing role of infection in penile carcinogenesis in the U.S. compared to other parts of the world.

  2. Measuring the Effect of Improved Medical Facilities and Focused Training on Data Quality and Completeness: An Example from the Gharbiah Population-Based Cancer Registry, Egypt.

    Science.gov (United States)

    Corley, Brittany; Ramadan, Mohamed; Smith, Brittney L; Seifeldein, Ibrahim A; Hablas, Ahmed; Soliman, Amr S

    2015-01-01

    Cancer rates are increasing in low- and middle- income countries. There are a limited number of populationbased cancer registries in Africa and the Egyptian population-based registry in Gharbiah is one of those registries. This registry has followed the standard international registration process and methods since 1999 and has been included in Cancer Incidence in Five Continents volumes IX and X. This article illustrates the reflection of improving medical care in the geographic region of the registry and focused training on enhancing the registry data. The registry area has seen advancement in medical care and cancer diagnostic facilities during the study period. The focused training included 8 different international training sessions over 8 different years for the registrars, administrators, and directors as well as continuing on-the-job training for other registry personnel. These improvements resulted in an overall 40% increase in nonmicroscopic diagnosis of hepatocellular carcinoma, as well as 20%, 10%, and 10% increases in microscopic diagnosis of pancreatic, brain, and lung cancers, respectively, over 9 years. An overall increase of 5% to 10% in subsite diagnosis was also seen for lung, colon, brain, bladder, and breast cancers for the same 9 years. An increase of 3% in grading was seen for solid tumors while 11% was seen for lymphoma. This study showed that low- and middle- income countries can observe higher data quality for cancer registries with improvement in medical care and focused training. PMID:27028092

  3. Accuracy of Self-Reported Breast Cancer Information among Women from the Ontario Site of the Breast Cancer Family Registry

    Directory of Open Access Journals (Sweden)

    Andriana Barisic

    2012-01-01

    Full Text Available Obtaining complete medical record information can be challenging and expensive in breast cancer studies. The current literature is limited with respect to the accuracy of self-report and factors that may influence this. We assessed the agreement between self-reported and medical record breast cancer information among women from the Ontario site of the Breast Cancer Family Registry. Women aged 20–69 years diagnosed with incident breast cancer 1996–1998 were identified from the Ontario Cancer Registry, sampled on age and family history. We calculated kappa statistics, proportion correct, sensitivity, specificity, and positive and negative predictive values and conducted unconditional logistic regression to examine whether characteristics of the women influenced agreement. The proportions of women who correctly reported having received a broad category of therapy (hormone therapy, chemotherapy, radiation, or surgery as well as sensitivity and specificity were above 90%, and the kappa statistics were above 0.80. The specific type of hormonal or chemotherapy was reported with low-to-moderate agreement. Aside from recurrence, no factors were consistently associated with agreement. Thus, most women were able to accurately report broad categories of treatment but not necessarily specific treatment types. The finding of this study can aid researchers in the use and design of self-administered treatment questionnaires.

  4. Connecting the Dots: Linking the National Program of Cancer Registries and the Needs of Survivors and Clinicians.

    Science.gov (United States)

    Ryerson, A Blythe; Eheman, Christie; Styles, Timothy; Rycroft, Randi; Snyder, Claire

    2015-12-01

    Cancer survivors, the medical community, public health professionals, researchers, and policymakers all need information about newly diagnosed cancer cases and deaths to better understand and address the disease burden. CDC collects cancer data on 96% of the U.S. population through the National Program of Cancer Registries. The National Program of Cancer Registries routinely collects data on all cancer occurrences, deaths, and the types of initial treatment received by the patients, and recently CDC has made advances in its cancer surveillance activities that have direct applicability to cancer survivorship research and care. This article examines CDC's innovative uses of the National Program of Cancer Registries infrastructure and data as a recruitment source for survivorship research studies and behavioral interventions; comparative effectiveness and patient-centered outcomes research; and the collection, consolidation, and dissemination of treatment summaries for cancer survivors and their providers. This paper also discusses long-term, idealistic plans for additional data linkages and sharing among public health, providers, and the cancer survivor through innovative concepts such as patient portals and rapid-learning health care. PMID:26590648

  5. Burden of head and neck cancers in Kamrup urban district cancer registry of Assam, India: a retrospective study

    Directory of Open Access Journals (Sweden)

    Jagannath Dev Sharma

    2014-08-01

    Full Text Available Background: Head and Neck cancers are basically squamous cell carcinomas. It is the fifth most common cancer and the sixth most common cause of cancer mortality in the world. Incidence of cancer as a whole for all sites is fourth highest in Kamrup Urban District (KUD in males (AAR 185.2 and second highest (AAR 156.3 in females out of all Population Based Cancer Registries (PBCR in India. Incidence of head and neck cancers in KUD is quite high both nationally and internationally. This retrospective study was carried out to assess the incidence pattern of head and neck cancers in Kamrup Urban District of Assam, India for the period of 2009-2011. Methods: Cancer is not notifiable in India, so method of collecting information on cancer was active in PBCR Guwahati. A total of 4416 cases were registered during the three years (1st January 2009- 31st December 2011 of which 2508 were male and 1908 female. Statistical analysis used: Age Adjusted Rate (AAR, Crude Rate (CR and Population pyramids are provided by NCRP-ICMR. Results: The relative proportion of head and neck cancers of total cancer cases registered in KUD constitutes 26% (654/2508 and 12% (225/1908 in male and female respectively. In males cancer of hypopharynx (AAR 14.7 was most common followed by tongue (AAR 9.4 and mouth (AAR 7.7. In females cancer of mouth (AAR 7.6 is most common followed by cancer of tongue (AAR 3.2. Conclusion: The pattern and incidence of various head and neck cancers is of utmost importance for primary prevention and early detection to adequately manage these cancers comprehensively in the community. [Int J Res Med Sci 2014; 2(4.000: 1382-1387

  6. Socio-demographic characteristics of cancer patients: Hospital based cancer registry in a tertiary care hospital of India

    Directory of Open Access Journals (Sweden)

    S Puri

    2014-01-01

    Full Text Available Aim: To determine the socio-demographic characteristics of cancer patients. Materials and Methods: Review of the Cancer registry, and patient interview. Information on socio-demographic profile, medical history, family history and previous treatment, if any, was retrieved from the patient. If the patient couldn′t be contacted then information was taken from pathology/radiotherapy or medical records department. Results: A total of 684 patients participated in the study. More than 40% of males and 53.7% of females were illiterate, P < 0.05. The majority (33.5% of participants were of low socioeconomic status. The most frequently reported cancer (ca in males it was ca lung (40.9 and ca oesophagus (9.8. In females most common cancer were ca breast (23.9 followed by ca cervix (11.7.

  7. Risk factors for anastomotic dehiscence in colon cancer surgery-a population-based registry study

    DEFF Research Database (Denmark)

    Gessler, Bodil; Bock, David; Pommergaard, Hans-Christian;

    2016-01-01

    PURPOSE: The aim of this was to assess potential risk factors for anastomotic dehiscence in colon cancer surgery in a national cohort. METHODS: All patients, who had undergone a resection of a large bowel segment with an anastomosis between 2008 and 2011, were identified in the Swedish Colon Cancer...... Registry. Patient factors, socioeconomic factors, surgical factors, and medication and hospital data were combined to evaluate risk factors for anastomotic dehiscence. RESULTS: The prevalence of anastomotic dehiscence was 4.3 % (497/11 565). Male sex, ASA classification III-IV, prescribed medications......, bleeding more than 300 mL, and uncommon colorectal resections were associated with a higher risk of anastomotic dehiscence. Hospital stay was increased with 14.5 days, and 30-day mortality as well as long-term mortality was higher in the anastomotic dehiscence group. CONCLUSIONS: There are several factors...

  8. Patrones de cambio de coberturas y usos del suelo en la región costa norte de Nayarit (1973-2000

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    César Alejandro Berlanga Robles

    2010-01-01

    Full Text Available Se clasificaron imágenes satelitales Landsat de los años 1973, 1990 y 2000 y posteriormente se realizó una comparación post-clasificatoria, con información digital complementaria, para analizar los cambios ocurridos en la cobertura vegetal y los usos del suelo de la región costa del norte de Nayarit (RCNN. Se produjeron mapas temáticos con nueve clases de cobertura y usos del terreno, con exactitudes totales > 85% y estimadores del coeficiente Kappa de 0.85 a 0.99 para las matrices de error espectral, en tanto que para el caso de las matrices de error real las exactitudes totales y Kappa fueron superiores al 87 y 0.85%, respectivamente. El análisis de las matrices de detección de cambio (1973- 1990, 1990-2000 y 1973-2000 indica que el porcentaje general de cambio en el área en estudio fue próximo al 25% entre periodos y del 30% para el periodo completo (1973-2000. En todos los casos existió una marcada tendencia al incremento de la superficie dedicada a las actividades humanas (agricultura, granjas camaronícolas y uso urbano y una disminución de las superficies con coberturas naturales como los bosques y los manglares.

  9. Characteristics of BRCA1/2 Mutation-Positive Breast Cancers in Korea: A Comparison Study Based on Multicenter Data and the Korean Breast Cancer Registry

    OpenAIRE

    Yu, Jong-Han; Lee, Jong Won; Son, Byung Ho; Kim, Sung-Won; Park, Sue K.; Lee, Min Hyuk; Kim, Lee Su; Noh, Woo-Chul; Kim, Eun-Kyu; Yoon, Dae Sung; Lee, Jeeyeon; Jung, Jin Hyang; Jung, Sang Seol; Gong, Gyungyup; Ahn, Sei-Hyun

    2014-01-01

    Purpose Mutations in BRCA genes are the main cause of hereditary breast cancer in Korea. The aim of this study was to investigate the characteristics of breast cancers involving BRCA1 (BRCA1 group) and BRCA2 (BRCA2 group) mutations. Methods We retrospectively reviewed the medical records of patients with BRCA1 (BRCA1 group) or BRCA2 (BRCA2 group) mutation positive breast cancer from multiple centers and compared the data to that of the Korean Breast Cancer Society registry (registry group). R...

  10. Socioeconomic Disparity in Breast Cancer Detection in Hong Kong – A High Income City: Retrospective Epidemiological Study Using the Breast Cancer Registry

    OpenAIRE

    Chor, Josette Sin Yee; Lam, Holly Ching Yu; Chan, Amy; Lee, Hang Mei; Fok, Eliza; Griffiths, Sian; Cheung, Polly

    2014-01-01

    Background It is not known whether socioeconomic disparities affect the detection of breast cancer in Asian countries where the incidence of breast cancer is a rising trend. In this study, we explore the socioeconomic profiles of women and the stage of the disease at the time of diagnosis in breast cancer patients aged 40 or over in Hong Kong. Method During the period 2008 to 2011, 5393 breast cancer patients registered with the Hong Kong Breast Cancer Registry. Participants and their clinici...

  11. Profiles of gall bladder cancer reported in the hospital cancer registry of a Regional Cancer Center in the North-East India

    OpenAIRE

    Srabana Misra Bhagabaty; Jagannath Dev Sharma; Manigreeva Krishnatreya; Pintu Nandy; Amal Chandra Kataki

    2014-01-01

    Background: The incidence of gall bladder cancer (GBC) is very high in this part of the world and there is little information on the descriptive epidemiology of GBC from our population. Methods: A retrospective study on the data set of hospital cancer registry was analyzed. The data set consisted of patient information registered during the period of January 2011 to December 2012. The cases included for the present study were histologically confirmed and radiologically diagnosed cases of G...

  12. Epidemiological Aspects of Head and Neck Cancers Based on Radiotherapy Registry in Hospital of Hasanuddin University South of Sulawesi Indonesia

    OpenAIRE

    A. St. Asmidar Anas; Bachtiar Murtala; Sri Oktawati; Harlina Ilmar

    2016-01-01

    The aim of this retrospective study was to identify epidemiological aspect of head and neck cancer defined as reported from a hospital-based radiotherapy registry in Hospital of Hasanuddin University South of Sulawesi Indonesia. The data were collected from medical records patient who treated with radiation therapy in a period of 2014-2015 with a view toward analyzing the sex, age, and site of cancers. Results described that a total of 187 cases were collected during the study period. The mea...

  13. ABRAXAS (FAM175A and Breast Cancer Susceptibility: No Evidence of Association in the Breast Cancer Family Registry.

    Directory of Open Access Journals (Sweden)

    Anne-Laure Renault

    Full Text Available Approximately half of the familial aggregation of breast cancer remains unexplained. This proportion is less for early-onset disease where familial aggregation is greater, suggesting that other susceptibility genes remain to be discovered. The majority of known breast cancer susceptibility genes are involved in the DNA double-strand break repair pathway. ABRAXAS is involved in this pathway and mutations in this gene impair BRCA1 recruitment to DNA damage foci and increase cell sensitivity to ionizing radiation. Moreover, a recurrent germline mutation was reported in Finnish high-risk breast cancer families. To determine if ABRAXAS could be a breast cancer susceptibility gene in other populations, we conducted a population-based case-control mutation screening study of the coding exons and exon/intron boundaries of ABRAXAS in the Breast Cancer Family Registry. In addition to the common variant p.Asp373Asn, sixteen distinct rare variants were identified. Although no significant difference in allele frequencies between cases and controls was observed for the identified variants, two variants, p.Gly39Val and p.Thr141Ile, were shown to diminish phosphorylation of gamma-H2AX in MCF7 human breast adenocarcinoma cells, an important biomarker of DNA double-strand breaks. Overall, likely damaging or neutral variants were evenly represented among cases and controls suggesting that rare variants in ABRAXAS may explain only a small proportion of hereditary breast cancer.

  14. ABRAXAS (FAM175A) and Breast Cancer Susceptibility: No Evidence of Association in the Breast Cancer Family Registry

    Science.gov (United States)

    Renault, Anne-Laure; Lesueur, Fabienne; Coulombe, Yan; Gobeil, Stéphane; Soucy, Penny; Hamdi, Yosr; Desjardins, Sylvie; Le Calvez-Kelm, Florence; Vallée, Maxime; Voegele, Catherine; Hopper, John L.; Andrulis, Irene L.; Southey, Melissa C.; John, Esther M.; Masson, Jean-Yves; Tavtigian, Sean V.; Simard, Jacques

    2016-01-01

    Approximately half of the familial aggregation of breast cancer remains unexplained. This proportion is less for early-onset disease where familial aggregation is greater, suggesting that other susceptibility genes remain to be discovered. The majority of known breast cancer susceptibility genes are involved in the DNA double-strand break repair pathway. ABRAXAS is involved in this pathway and mutations in this gene impair BRCA1 recruitment to DNA damage foci and increase cell sensitivity to ionizing radiation. Moreover, a recurrent germline mutation was reported in Finnish high-risk breast cancer families. To determine if ABRAXAS could be a breast cancer susceptibility gene in other populations, we conducted a population-based case-control mutation screening study of the coding exons and exon/intron boundaries of ABRAXAS in the Breast Cancer Family Registry. In addition to the common variant p.Asp373Asn, sixteen distinct rare variants were identified. Although no significant difference in allele frequencies between cases and controls was observed for the identified variants, two variants, p.Gly39Val and p.Thr141Ile, were shown to diminish phosphorylation of gamma-H2AX in MCF7 human breast adenocarcinoma cells, an important biomarker of DNA double-strand breaks. Overall, likely damaging or neutral variants were evenly represented among cases and controls suggesting that rare variants in ABRAXAS may explain only a small proportion of hereditary breast cancer. PMID:27270457

  15. Age-specific interval breast cancers in Japan. Estimation of the proper sensitivity of screening using a population-based cancer registry

    International Nuclear Information System (INIS)

    The age-specific sensitivity of a screening program was investigated using a population-based cancer registry as a source of false-negative cancer cases. A population-based screening program for breast cancer was run using either clinical breast examinations (CBE) alone or mammography combined with CBE in the Miyagi Prefecture from 1997 to 2002. Interval cancers were newly identified by linking the screening records to the population-based cancer registry to estimate the number of false-negative cases of screening program. Among 112071 women screened by mammography combined with CBE, the number of detected cancers, false-negative cases and the sensitivity were 289, 22 and 92.9%, respectively, based on the reports from participating municipalities. The number of newly found false-negative cases and corrected sensitivity when using the registry were 34 and 83.8%, respectively. In detected cancers, the sensitivity of screening by mammography combined with CBE in women ranging from 40 to 49 years of age based on a population-based cancer registry was much lower than that in women 50-59 and 60-69 years of age (40-49: 18, 71.4%, 50-59: 19, 85.8%, 60-69: 19, 87.2%). These data suggest that the accurate outcome of an evaluation of breast cancer screening must include the use of a population-based cancer registry for detecting false-negative cases. Screening by mammography combined with CBE may therefore not be sufficiently sensitive for women ranging from 40 to 49 years of age. (author)

  16. Cancer trends in Kashmir; common types, site incidence and demographic profiles: National Cancer Registry 2000-2012

    Directory of Open Access Journals (Sweden)

    M A Wani

    2014-01-01

    Full Text Available Background: An assessment of cancer incidence in population is required for prevention, early diagnosis, treatment and resource allocation. This will also guide in the formation of facilities for diagnosis, treatment, rehabilitation and follow-up for these patients. The demographic trend of cancer will help to identify common types and etiological factors. Efforts at clinical, research and administrative levels are needed to overcome this problem. Settings and Design: Present retro prospective study was conducted in regional cancer center of a tertiary care hospital. Materials and Methods: After permission from ethics committee, a retro prospective study of 1 year duration was undertaken to study the profile of cancer patients and to compare it with other cancer registries in India. Statistical Analysis: Pearson′s Chi-square test and simple linear regression were used. Statistical Package for the Social Sciences version-16 (University of Bristol information services (www.bristol.ac.uk/is/learning/resources was used. RESULTS: The overall incidence of cancer in Kashmir is on the increase and common sites of cancer are esophagus and gastroesophageal (GE junction, lung, stomach, colorectal, lymphomas, skin, laryngopharynx, acute leukemias, prostate and brain in males.In females common sites are breast, esophagus and GE junction, ovary, colorectal, stomach, lung, gallbladder, lymphomas, acute leukemias and brain. Conclusion: Cancers of esophagus, stomach and lungs have a high incidence both in men and women in Kashmir. Future studies on sources and types of environmental pollution and exposures in relation to these cancers may improve our understanding of risk factors held responsible for causation of these malignancies in this region. This will help in the allocation of available resources for prevention and treatment strategies.

  17. Worry Is Good for Breast Cancer Screening: A Study of Female Relatives from the Ontario Site of the Breast Cancer Family Registry

    OpenAIRE

    Li Rita Zhang; Chiarelli, Anna M; Gord Glendon; Lucia Mirea; Knight, Julia A.; Andrulis, Irene L.; Paul Ritvo

    2012-01-01

    Background. Few prospective studies have examined associations between breast cancer worry and screening behaviours in women with elevated breast cancer risks based on family history. Methods. This study included 901 high familial risk women, aged 23–71 years, from the Ontario site of the Breast Cancer Family Registry. Self-reported breast screening behaviours at year-one followup were compared between women at low (N = 305), medium (N = 433), and high (N = 163) levels of baseline breast canc...

  18. Clinical Stages in Patients with Primary and Subsequent Cancers Based on the Czech Cancer Registry 1976–2005

    Science.gov (United States)

    Štampach, Radim; Dítě, Petr; Kozel, Jiří; Horváth, Teodor; Kubíček, Petr

    2013-01-01

    Of 1,486,984 new cancers registered in the Czech Cancer Registry in 1976-2005, 290,312 (19.5%) were multiple malignant neoplasms (MMNs), of which there were 65,292 primary and 89,796 subsequent cases in men and 59,970 primary and 75,254 subsequent cases in women. The duplicities were higher in women, and the triplicities and others (3–6 MMNs) were higher in men. The most frequent diagnoses were the primary cancers of skin, gastrointestinal and urinary tract, male genital organs, respiratory tract in men, and cancers of skin, breast, female genital organs, and gastrointestinal tract in women. The analysis of the early and advanced clinical stages shows that the number of subsequent advanced stages increased after primary advanced stages. Their time-age-space distributions visualized maps of MMNs in 14 Czech regions. These results support the improvement of algorithms of dispensary care for the early detection of the subsequent neoplasms. PMID:23936674

  19. Cancer survival among children of Turkish descent in Germany 1980–2005: a registry-based analysis

    Directory of Open Access Journals (Sweden)

    Razum Oliver

    2008-11-01

    Full Text Available Abstract Background Little is known about the effect of migrant status on childhood cancer survival. We studied cancer survival among children of Turkish descent in the German Cancer Childhood Registry, one of the largest childhood cancer registries worldwide. Methods We identified children of Turkish descent among cancer cases using a name-based approach. We compared 5-year survival probabilities of Turkish and other children in three time periods of diagnosis (1980–87, 1988–95, 1996–2005 using the Kaplan-Meier method and log-rank tests. Results The 5-year survival probability for all cancers among 1774 cases of Turkish descent (4.76% of all 37.259 cases was 76.9% compared to 77.6% in the comparison group (all other cases; p = 0.15. We found no age- or sex-specific survival differences (p-values between p = 0.18 and p = 0.90. For the period 1980–87, the 5-year survival probability among Turkish children with lymphoid leukaemia was significantly lower (62% versus 75.8%; p Conclusion Our results suggest that nowadays Turkish migrant status has no bearing on the outcome of childhood cancer therapies in Germany. The inclusion of currently more than 95% of all childhood cancer cases in standardised treatment protocols is likely to contribute to this finding.

  20. The Spatial Distribution of Cancer Incidence in Fars Province: A GIS-Based Analysis of Cancer Registry Data

    Science.gov (United States)

    Goli, Ali; Oroei, Mahbobeh; Jalalpour, Mehdi; Faramarzi, Hossein; Askarian, Mehrdad

    2013-01-01

    Background: Cancer is a major health problem in the developing countries. Variations of its incidence rate among geographical areas are due to various contributing factors. This study was performed to assess the spatial patterns of cancer incidence in the Fars Province, based on cancer registry data and to determine geographical clusters. Methods: In this cross sectional study, the new cases of cancer were recorded from 2001 to 2009. Crude incidence rate was estimated based on age groups and sex in the counties of the Fars Province. Age-standardized incidence rates (ASR) per 100,000 was calculated in each year. Spatial autocorrelation analysis was performed in measuring the geographic patterns and clusters using geographic information system (GIS). Also, comparisons were made between ASRs in each county. Results: A total of 28,411 new cases were diagnosed with cancer during 2001-2009 in the Fars Province, 55.5% of which were men. The average age was 61.6 ± 0.5 years. The highest ASR was observed in Shiraz, which is the largest county in Fars. The Moran's Index of cancer was significantly clustered in 2004, 2005, and 2006 in total, men, and women. The type of spatial clustering was high-high cluster, that to indicate from north-west to south-east of Fars Province. Conclusions: Analysis of the spatial distribution of cancer shows significant differences from year to year and between different areas. However, a clear spatial autocorrelation is observed, which can be of great interest and importance to researchers for future epidemiological studies, and to policymakers for applying preventive measures. PMID:24319551

  1. Trends in lung cancer incidence and survival: studies based on cancer registries

    OpenAIRE

    Janssen-Heijnen, Maryska

    1998-01-01

    textabstractIn this thesis trends in the incidence and survival of patients with lung cancer since 1960 in the southeastern part of the Netherlands are described and interpreted. These trends may provide an insight into changes in mortality due to lung cancer in a region with the oldest cancer registlY in the Netherlands. Chapter 1.2 contains a review of literature on trends in the incidence and survival of lung cancer. The methods used for the studies of this thesis are described in chapter ...

  2. Representativeness of two sampling procedures for an internet intervention targeting cancer-related distress: a comparison of convenience and registry samples

    OpenAIRE

    Owen, Jason E.; Bantum, Erin O'Carroll; Criswell, Kevin; Bazzo, Julie; Gorlick, Amanda; Stanton, Annette L.

    2013-01-01

    Internet interventions often rely on convenience sampling, yet convenience samples may differ in important ways from systematic recruitment approaches. The purpose of this study was to evaluate potential demographic, medical, and psychosocial differences between Internet-recruited and registry-recruited cancer survivors in an Internet-based intervention. Participants were recruited from a cancer registry (n = 80) and via broad Internet outreach efforts (n = 160). Participants completed a set ...

  3. Occupational risk factors for testicular cancer: a registry-based case-control study in Rhineland Palatinate – Germany

    Science.gov (United States)

    Yousif, Lamyaa; Hammer, Gaël P.; Emrich, Katharina; Blettner, Maria; Zeeb, Hajo

    2013-01-01

    Objectives: Testicular cancer affects mainly men below the age of 50. An association with occupation and social status has been suggested but risk factors are not well understood. A registry-based case-control study focusing on occupation was performed in Germany. Methods: All 348 testicular cancer cases with available gainful occupational information registered between 2000 and 2005; as well as 564 suitable controls (from a pool of other cancers) were drawn from the Cancer Registry of Rhineland-Palatinate. Unconditional logistic regression was used to compute odds ratios (OR) and associated 95% confidence intervals (CI). Results: Slightly elevated OR were observed for technicians and related professionals (OR 1.62, 95% CI 1.00–2.63) and for clerical support workers (OR 1.71, 95% CI 1.14–2.56). This increase was highest in the age group 20–50 for technicians (OR 2.02, 95% CI 1.23–3.33) and clerks (OR 2.00, 95% CI 1.30–3.09), respectively. An association with testicular cancer was observed for no other occupation. Conclusion: An increased risk of testicular cancer was observed for technicians and related professionals and clerical support workers. This could be related to socioeconomic status or sedentary life style, two factors that were identified in previous studies. While the feasibility of a purely registry-based study was shown, missing occupational data and the choice of cancer controls represent challenges to the validity of this approach. PMID:24265602

  4. Lung Cancer: A survival analysis using data from the National Cancer Registry Uruguay of patients diagnosed in 2008

    International Nuclear Information System (INIS)

    Full text: Objective: To analyze survival (S V)from cancer in a cohort of patients Uruguayan drawn from the population-based registry and its association with clinical predictors and welfare. Materials and Methods: Retrospective analysis of patients in which there has been diagnosis of lung cancer in 2008. From the data base incidence and mortality of the 2008 RNC observed S V is calculated and constructed Kaplan Meier curves. We compare the S V as clinical variables (sex, age, extent lesion, histological type)and health care (patients seen in mutual and services health state in Montevideo and the Interior)by log rank test. Analysis is performed multivariate (Cox regression). Excluded from analysis identified patients only by death certificate (D CO)Results: We analyzed 1077 cases. The median S V entire cohort was 293 days (approx 9 months). In univariate analysis were statistically significantly sex, age, disease extension and some histological types. There were statistically S V significantly among patients treated at public and private centers assisted in Montevideo and the inside. In multivariate analysis, significant persists association with age, disease extension and assistance in public or private centers. Conclusions: In this cohort demonstrates S V comparable lung cancer to international series and an association with clinical variables consistent with them. Statistically significant differences were observed between patients assisted in public and private, which warrants further deeper analysis to determine the cause of this difference,

  5. A Nation-Wide Cancer Registry-Based Study of Adenosquamous Carcinoma in Taiwan.

    Directory of Open Access Journals (Sweden)

    Yuan-Tzu Lan

    Full Text Available Adenosquamous carcinoma (ASC is a rare disease involving various organs, yet there are no large-scale population-based comparative studies on ASC among different organs.The incidence and overall survival of ASC among various organs in cases diagnosed in Taiwan from January 1, 2003 to December 31, 2010 were calculated and compared using data from the Taiwan Cancer Registry (TCR. The various organs were classified and divided into three different systems: the female reproductive, respiratory, and alimentary systems. Survival analysis were also compared among 30,850 patients diagnosed as ASC, adenocarcinoma (AC or squamous cell carcinoma (SCC in organs with frequent ASC.During the study period, a total of 576 ASC cases were diagnosed in Taiwan. The most common primary system was respiratory (73.8%, followed by alimentary (16.2% and female reproductive (10%. The overall survival were significantly higher for cases involving the female reproductive system, followed by the respiratory and alimentary systems (P = 0.016. The median overall survival were worse in males than females for cases involving the respiratory system (22.4 vs. 31.8 months, P = 0.044. Multivariate analysis showed that age ≧ 65, more advanced T and N categories were independent unfavorable prognostic factors of overall survival in ASC. ASC histology is an independent unfavorable prognostic factor compared with AC and SCC.ASC at an old age and more advanced T and N categories were found to be associated with a poor prognosis.

  6. Incidences of overall and site specific cancers in TNFα inhibitor treated patients with rheumatoid arthritis and other arthritides - a follow-up study from the DANBIO Registry

    DEFF Research Database (Denmark)

    Dreyer, Lene; Mellemkjær, Lene; Andersen, Anne Rødgaard;

    2013-01-01

    OBJECTIVES: To investigate the incidence of cancer in arthritis patients treated with or without TNFα inhibitors (TNF-I). METHODS: Arthritis patients from the DANBIO database were followed-up for cancer in the Danish Cancer Registry during 2000-2008. RESULTS: Hazard ratio for cancer overall was 1...... with an overall excess of cancer in arthritis patients, but observed increased risks of colon and ovarian cancer need further investigation....

  7. Coverage and accuracy of myeloproliferative and myelodysplastic neoplasms in the Finnish Cancer Registry.

    Science.gov (United States)

    Leinonen, Maarit K; Rantanen, Matti; Pitkäniemi, Janne; Malila, Nea

    2016-06-01

    Background Registration of haematological malignancies presents specific challenges, and a wide range of data is required to ensure case ascertainment and proper classification of these diseases. We studied the data quality of myeloproliferative and myelodysplastic neoplasms in the Finnish Cancer Registry (FCR), comparing information with hospital discharges. Material and methods Hospital discharges (HILMO) in 2007-2013 including diagnostic codes of myeloproliferative and myelodysplastic neoplasms were extracted. Patients were individually linked to the FCR database for all haematological malignancies registered in 1953-2013. Coverage and accuracy of the FCR and agreement between registers was estimated. Results In total 5289 individuals were retrieved from two registers. Of these, 1406 were common, 1080 only found in the FCR and 2803 only in the HILMO. Coverage of myeloproliferative and myelodysplastic neoplasms in the FCR was 47.0% (95% CI 45.7-48.4%). Almost one quarter of the registrations in the FCR was based on a death certificate only. The accuracy of diagnosis was 51.4% (95% CI 49.4-53.3%), but it varied substantially by disease category. Kappa statistic for agreement between registers was excellent (0.83, 95% CI 0.80-0.85) for common cases. 7.6% of cases in the HILMO was registered as leukaemias in the FCR. Conclusions More than half of the patients found in the HILMO were entirely missing from the FCR. However, some of the diagnoses in HILMO may be preliminary and this represents the maximal number of missing cases. Cancer registers benefit from supplementary data sources, such as hospital discharges, to increase coverage and accuracy of register data on haematological malignancies. PMID:26767306

  8. Cancer incidence in Bucaramanga Metropolitan Area, 2000-2004. First five years report from population based cancer registry of Metropolitan Area of Bucaramanga.

    Directory of Open Access Journals (Sweden)

    Erika Eliana Meza Durán

    2007-11-01

    Full Text Available Cancer is one of the most common chronic diseases that cause high morbidity and mortality. In the evaluation of all illnessand its impact on the community, a surveillance system becomes necessary to allows us to know its incidence. Cancersurveillance is achieved by the population-based cancer registry. Methodology: The Population Based Cancer Registry ofMetropolitan Area of Bucaramanga (RPC-AMB collected information from the years 2000 to 2004, in patients with anymalignant cancer the which include both invasive and in situ behavior in addition to reside within this geographical area . TheCancer Registry also collects data on brain and nervous system tumors classified as benign or those that have uncertainbehavior. Basal cell cancers of the skin were included during the two first years as well as all the intraepithelial neoplasm ofthe cervix. Active collections of information at all sources by registry staff were made (Hospitals, Health care institutions,especially oncology centers and Pathology and Hematology Laboratories and some specialist in oncology attention. Theinclusion approaches are verified and collects data on specific sociodemographic information (age, gender, residence, placeof birth, etc. and on the anatomic site of the tumor, the cell type of the cancer, behavior and extension on each individualdiagnosed with cancer. Each case was coded using the International Classification of Diseases Oncology Third Edition (ICDO-3, for topographical and morphological code. The data was entered into a computer with CanReg-4 software that is aconfigurable computer program designed for cancer registration in population-based registries and was provided as aservice by the Descriptive Epidemiology Unit to members of the International Association of Cancer Registries. This softwareprovides the number of cancer cases (frequency and the incidence rates. The quality control included exhaustiveness of thecases and information, verification of the

  9. Quality of Life and Mortality of Long-Term Colorectal Cancer Survivors in the Seattle Colorectal Cancer Family Registry

    Science.gov (United States)

    Adams, Scott V.; Ceballos, Rachel; Newcomb, Polly A.

    2016-01-01

    Background and Aim Because most colorectal cancer patients survive beyond five years, understanding quality of life among these long-term survivors is essential to providing comprehensive survivor care. We sought to identify personal characteristics associated with reported quality of life in colorectal cancer survivors, and sub-groups of survivors potentially vulnerable to very low quality of life. Methods We assessed quality of life using the Veterans RAND 12-item Health Survey within a population-based sample of 1,021 colorectal cancer survivors in the Seattle Colorectal Cancer Family Registry, approximately 5 years post-diagnosis. In this case-only study, mean physical component summary scores and mental component summary scores were examined with linear regression. To identify survivors with substantially reduced ability to complete daily tasks, logistic regression was used to estimate odds ratios for “very low” summary scores, defined as a score in the lowest decile of the reference US population. All cases were followed for vital status following QoL assessment, and mortality was analyzed with Cox proportional hazards regression. Results Lower mean physical component summary score was associated with older age, female sex, obesity, smoking, and diabetes or other co-morbidity; lower mean mental component summary score was associated with younger age and female sex. Higher odds of very low physical component summary score was associated with older age, obesity, less education, smoking, co-morbidities, and later stage at diagnosis; smoking was associated with higher odds of very low mental component summary score. A very low physical component score was associated with higher risk of mortality (hazard ratio (95% confidence interval): 3.97 (2.95–5.34)). Conclusions Our results suggest that identifiable sub-groups of survivors are vulnerable to very low physical components of quality of life, decrements that may represent meaningful impairment in completing

  10. Quality of Life and Mortality of Long-Term Colorectal Cancer Survivors in the Seattle Colorectal Cancer Family Registry.

    Directory of Open Access Journals (Sweden)

    Scott V Adams

    Full Text Available Because most colorectal cancer patients survive beyond five years, understanding quality of life among these long-term survivors is essential to providing comprehensive survivor care. We sought to identify personal characteristics associated with reported quality of life in colorectal cancer survivors, and sub-groups of survivors potentially vulnerable to very low quality of life.We assessed quality of life using the Veterans RAND 12-item Health Survey within a population-based sample of 1,021 colorectal cancer survivors in the Seattle Colorectal Cancer Family Registry, approximately 5 years post-diagnosis. In this case-only study, mean physical component summary scores and mental component summary scores were examined with linear regression. To identify survivors with substantially reduced ability to complete daily tasks, logistic regression was used to estimate odds ratios for "very low" summary scores, defined as a score in the lowest decile of the reference US population. All cases were followed for vital status following QoL assessment, and mortality was analyzed with Cox proportional hazards regression.Lower mean physical component summary score was associated with older age, female sex, obesity, smoking, and diabetes or other co-morbidity; lower mean mental component summary score was associated with younger age and female sex. Higher odds of very low physical component summary score was associated with older age, obesity, less education, smoking, co-morbidities, and later stage at diagnosis; smoking was associated with higher odds of very low mental component summary score. A very low physical component score was associated with higher risk of mortality (hazard ratio (95% confidence interval: 3.97 (2.95-5.34.Our results suggest that identifiable sub-groups of survivors are vulnerable to very low physical components of quality of life, decrements that may represent meaningful impairment in completing everyday tasks and are associated with

  11. Nanomaterial Registry

    Data.gov (United States)

    U.S. Department of Health & Human Services — The Nanomaterial Registry compiles data from multiple databases into a single resource. The goal of this resource is to establish a curated nanomaterial registry,...

  12. Rectal cancer treatment and outcome in the elderly: an audit based on the Swedish rectal cancer registry 1995–2004

    International Nuclear Information System (INIS)

    Limited information is available regarding the effect of age on choice of surgical and oncological treatment for rectal cancer. The objective of this study was to assess the influence of age on treatment and outcome of rectal cancer. We utilized data in the Swedish Rectal Cancer Registry (SRCR) from patients treated for rectal cancer in Sweden in 1995–2004. A total of 15,104 patients with rectal cancer were identified, 42.4% of whom were 75 years or older. Patients ≥75 years were less likely to have distant metastases than younger patients (14.8% vs. 17.8%, P < 0.001), and underwent abdominal tumor resection less frequently (68.5% vs. 84.4%, P < 0.001). Of 11,725 patients with abdominal tumor resection (anterior resection [AR], abdominoperineal excision [APE], and Hartmann's procedure [HA]), 37.4% were ≥75 years. Curative surgery was registered for 85.0% of patients ≥ 75 years and for 83.9% of patients < 75 years, P = 0.11. Choice of abdominal operation differed significantly between the two age groups for both curative and non-curative surgery, The frequency of APE was similar in both age groups (29.5% vs. 28.6%), but patients ≥75 years were more likely to have HA (16.9% vs. 4.9%) and less likely to have preoperative radiotherapy (34.3vs. 67.2%, P < 0.001). The relative survival rate at five years for all patients treated with curative intent was 73% (70–75%) for patients ≥75 years and 78% (77–79%) for patients < 75 years of age. Local recurrence rate was 9% (8–11%) for older and 8% (7–9%) for younger patients. Treatment of rectal cancer is influenced by patient's age. Future studies should include younger and older patients alike to reveal whether or not age-related differences are purposive. Local recurrence following surgery for low tumors and quality of life aspects deserve particular attention

  13. Risk of breast cancer following fertility treatment – A registry based cohort study of parous women in Norway

    Science.gov (United States)

    Reigstad, Marte Myhre; Larsen, Inger Kristin; Myklebust, Tor Åge; Robsahm, Trude Eid; Oldereid, Nan Birgitte; Omland, Anne Katerine; Vangen, Siri; Brinton, Louise Annette; Storeng, Ritsa

    2014-01-01

    Despite increasing numbers of women availing themselves of assisted reproductive technology (ART), effects on cancer risk remain unresolved. Given hormonal exposures, breast cancer risk is of particular concern. The aim of this study is to investigate breast cancer risk amongst women giving birth following ART as compared to that amongst women who gave birth without ART. Data on all women who gave birth in Norway with or without ART, between 1984 and 2010 was obtained from the Medical Birth Registry of Norway (MBRN). 808 834 women eligible for study were linked to the Cancer Registry of Norway. Cox proportional hazards model computed relative risk of breast cancer between the two groups, adjusting for age, parity, age at first birth, calendar period and region of residence. A total of 8037 women were diagnosed with breast cancer during the study period, 138 ART women and 7899 unexposed. Total follow-up time was 12 401 121 person-years (median 16.0), median age at entry was 32.5 years (range18.6-49.9) for ART women and 26.3 (range 10.5-54.6) for women without ART. Women exposed to ART had an elevated risk of breast cancer (adjusted HR 1.20, 95% CI 1.01-1.42). Subgroup analyses resulted in an HR of 1.30 (95% CI 1.07-1.57) for women treated with IVF and 1.35 (95 % CI 1.07-1.71) for women with follow-up >10 years, compared with controls. Our findings of increased risk in the study population, warrant continued monitoring of women treated with ART as this population advances into more typical cancer age ranges. PMID:25042052

  14. Meat intake, cooking methods, dietary carcinogens, and colorectal cancer risk: findings from the Colorectal Cancer Family Registry

    International Nuclear Information System (INIS)

    Diets high in red meat and processed meats are established colorectal cancer (CRC) risk factors. However, it is still not well understood what explains this association. We conducted comprehensive analyses of CRC risk and red meat and poultry intakes, taking into account cooking methods, level of doneness, estimated intakes of heterocyclic amines (HCAs) that accumulate during meat cooking, tumor location, and tumor mismatch repair proficiency (MMR) status. We analyzed food frequency and portion size data including a meat cooking module for 3364 CRC cases, 1806 unaffected siblings, 136 unaffected spouses, and 1620 unaffected population-based controls, recruited into the CRC Family Registry. Odds ratios (OR) and 95% confidence intervals (CI) for nutrient density variables were estimated using generalized estimating equations. We found no evidence of an association between total nonprocessed red meat or total processed meat and CRC risk. Our main finding was a positive association with CRC for pan-fried beefsteak (Ptrend < 0.001), which was stronger among MMR deficient cases (heterogeneity P = 0.059). Other worth noting associations, of borderline statistical significance after multiple testing correction, were a positive association between diets high in oven-broiled short ribs or spareribs and CRC risk (Ptrend = 0.002), which was also stronger among MMR-deficient cases, and an inverse association with grilled hamburgers (Ptrend = 0.002). Our results support the role of specific meat types and cooking practices as possible sources of human carcinogens relevant for CRC risk

  15. Transition probabilities of HER2-positive and HER2-negative breast cancer patients treated with Trastuzumab obtained from a clinical cancer registry dataset.

    Science.gov (United States)

    Pobiruchin, Monika; Bochum, Sylvia; Martens, Uwe M; Kieser, Meinhard; Schramm, Wendelin

    2016-06-01

    Records of female breast cancer patients were selected from a clinical cancer registry and separated into three cohorts according to HER2-status (human epidermal growth factor receptor 2) and treatment with or without Trastuzumab (a humanized monoclonal antibody). Propensity score matching was used to balance the cohorts. Afterwards, documented information about disease events (recurrence of cancer, metastases, remission of local/regional recurrences, remission of metastases and death) found in the dataset was leveraged to calculate the annual transition probabilities for every cohort. PMID:27054173

  16. Hematologic malignancies in South Africa 2000-2006: analysis of data reported to the National Cancer Registry.

    Science.gov (United States)

    Schonfeld, Sara J; Erdmann, Friederike; Wiggill, Tracey; Singh, Elvira; Kellett, Patricia; Babb, Chantal; Schüz, Joachim

    2016-04-01

    Little is known about the incidence patterns of hematologic malignancies in Sub-Saharan Africa, including South Africa. We estimated incidence rates of pathology-confirmed adult cases of leukemia, myeloma and related diseases (myeloma), Hodgkin lymphoma (HL), and non-Hodgkin lymphoma (NHL) reported to the National Cancer Registry of South Africa (NCR) between 2000 and2006, by age, gender, and population group (Black, White, Coloured, Asian/Indian). Gender-specific age-standardized rates were calculated overall and by population group and incidence rate ratios (IRRs) were estimated using Poisson regression models. Between 2000 and 2006, there were 14662 cases of leukemia, myeloma, HL, and NHL reported to the registry. Incidence rates of reported hematologic malignancies were generally 20-50% higher among males than females. Our analyses suggested marked differences in the rates of reported hematologic malignancies by population group which were most pronounced when comparing the White versus Black population groups (IRRs ranging from 1.6 for myeloma to 3.8 for HL for males and females combined). Challenges related to diagnosis and reporting of cancers may play a role in the patterns observed by population group while the set-up of the NCR (pathology-based) could lead to some degree of under-ascertainment in all groups. This is the first country-wide report of the incidence of hematologic malignancies in South Africa. Despite challenges, it is important to analyze and report available national cancer incidence data to raise awareness of the cancer burden and to characterize patterns by demographic characteristics so as ultimately to improve the provision of cancer-related health care. PMID:26773310

  17. Joint and independent effect of alcohol and tobacco use on the risk of subsequent cancer incidence among cancer survivors: A cohort study using cancer registries.

    Science.gov (United States)

    Tabuchi, Takahiro; Ozaki, Koken; Ioka, Akiko; Miyashiro, Isao

    2015-11-01

    Drinking alcohol and smoking tobacco are major modifiable risk factors for cancer. However, little is known about whether these modifiable factors of cancer survivors are associated with subsequent primary cancer (SPC) incidence, regardless of the first cancer sites. 27,762 eligible cancer survivors diagnosed between 1985 and 2007 were investigated for SPC until the end of 2008, using hospital-based and population-based cancer registries. The association between drinking, smoking and combined drinking and smoking (interaction) at the time of the first cancer diagnosis and incidence of SPCs (i.e., all SPCs, alcohol-related, smoking-related and specific SPCs) was estimated by Poisson regression. Compared with never-drinker/never-smoker, the categories ever-drinker/ever-smoker, current-drinker/current-smoker and heavy-drinker/heavy-smoker had 43-108%, 51-126% and 167-299% higher risk for all, alcohol-related and tobacco-related SPCs, respectively. The interaction of drinking and smoking had significantly high incidence rate ratios (IRRs) for SPCs among ever-drinker/ever-smoker and current-drinker/current-smoker, although ever drinking did not show a significant risk. Ever-drinker/ever-smoker had also significantly higher IRRs for esophageal and lung SPCs than never-drinker/never-smoker. Among comprehensive cancer survivors, ever and current drinkers only had a SPC risk when combined with smoking, while ever and current smokers had a SPC risk regardless of drinking status. Heavy drinking and heavy smoking were considered to be independent additive SPC risk factors. To reduce SPC incidence, it may be necessary (i) to reduce or stop alcohol use, (ii) to stop tobacco smoking and (iii) dual users, especially heavy users, should be treated as a high-risk population for behavioral-change intervention. PMID:25904109

  18. Cancer incidence among alcoholic liver disease patients in Finland: A retrospective registry study during years 1996-2013.

    Science.gov (United States)

    Sahlman, Perttu; Nissinen, Markku; Pukkala, Eero; Färkkilä, Martti

    2016-06-01

    Both alcohol abuse and liver cirrhosis are known risk factors for various cancers. This article was aimed to assess the long-term risk of malignancies among patients with severe alcoholic liver disease (ALD), i.e., alcoholic liver cirrhosis and alcoholic hepatitis. A cohort of 8,796 male and 3,077 female ALD patients from 1996 to 2012 was identified from the Finnish National Hospital Discharge Register. This nationwide cohort was combined with the data from the Finnish Cancer Registry for incidence of malignancies during the years 1996-2013. The cancer cases diagnosed were compared with the number of cancers in the general population. The number of malignancies in our cohort was 1,052 vs. 368 expected. There was statistically significant excess of cancers of the liver, (standardized incidence ratio [SIR] 59.20; 95% CI 53.11-65.61), pancreas (SIR 3.71; 95% CI 2.72-4.94), pharynx (SIR 9.25; 95% CI 6.05-13.56), mouth (SIR 8.31; 95% CI 4.84-13,29), oesophagus (SIR 7.92; 95% CI 5.49-11.07), tongue (SIR 7,21; 95% CI 3.60-12.89), larynx (SIR 5.20; 95% CI 2.77-8.89), lung (SIR 2.77; 95% CI 2.27-3.32), stomach (SIR 2.76; 95% CI 1.79-4.07), kidney (SIR 2.69; 95% CI 1.84-3.79) and colon (SIR 2.33; 95% CI 1.70-3.11). There was no decreased risk of any cancer among ALD patients. Severe ALD is associated with markedly increased risk of malignancies. The risk is especially high for hepatocellular carcinoma, but also significantly increased for cancers of the upper aerodigestive tract, pancreas and kidneys, and warrants cancer surveillance in selected cases. PMID:26756434

  19. Breast cancer incidence and survival: registry-based studies of long-term trends and determinants

    NARCIS (Netherlands)

    M.W.J. Louwman (Marieke)

    2007-01-01

    markdownabstract__Abstract__ Breast cancer is the most frequent cancer among women in the Netherlands, and it is the most important cause of cancer death. Between age 35 and 55 about 20% of all deaths among women is due to breast cancer.1 The age-standardised incidence rate is among the highest in

  20. Mast cell tumours and other skin neoplasia in Danish dogs - data from the Danish Veterinary Cancer Registry

    Directory of Open Access Journals (Sweden)

    Kristensen Annemarie T

    2010-01-01

    Full Text Available Abstract Background The Danish Veterinary Cancer Registry (DVCR was established in May 2005 to gather information about neoplasms in the Danish dog and cat populations. Practitioners from more than 60 clinics throughout Denmark have submitted data on these species. The objectives of the current study were, with a special focus on mast cell tumours (MCT to investigate the occurrence, gender distribution, biological behaviour, locations, types, the diagnostic method used and treatment of skin neoplasms in dogs based on information reported to the DVCR. Methods From May 15th 2005 through February 29th 2008, reports on a total of 1,768 canine cases of neoplasia in the skin, subcutis or adnexa were submitted. Of these, 765 cases (43% were confirmed by cytology or histopathology. Results The majority of dogs had a benign neoplasm (66% while 21% were cases of malignant neoplasia. The most commonly encountered malignant neoplasms were MCT and soft tissue sarcomas and for benign neoplasms, lipomas and histiocytomas were the most common. The location of the neoplasms were primarily in the cutis, subcutis or in the perianal region. The occurrence, gender distribution, biological behaviour and location of canine skin neoplasias in Denmark were similar to earlier reports, although some national variations occurred. A correlation between grade of MCT and the proportion of cases treated surgically was observed. Conclusions Population based cancer registries like the DVCR are of importance in the collection of non-selected primary information about occurrence and distribution of neoplasms. The DVCR provides detailed information on cases of skin neoplasms in dogs and may serve as a platform for the study of sub-sets of neoplastic diseases (e.g. MCT or subgroups of the canine population (e.g. a specific breed.

  1. Structured electronic template for histopathology reports on colorectal carcinomas: a joint project by the Cancer Registry of Norway and the Norwegian Society for Pathology.

    Science.gov (United States)

    Bjugn, Roger; Casati, Bettina; Norstein, Jarle

    2008-03-01

    Both individual patient treatment and cancer registries depend on adequate histopathology reports. To ensure the quality of these reports, professional organizations have published guidelines on minimum data sets for various cancer types. Norway has a population of 4.6 million, and all individuals have a unique identification number. As required by law, relevant information on cancer is submitted to the Cancer Registry of Norway. A closed, national health data network has been established facilitating electronic transferal between various institutions. The Cancer Registry and the Norwegian Society for Pathology have jointly established a nationwide project to (i) develop standardized templates in database format for histopathology reports on cancer resection specimens and (ii) develop an Extensible Markup Language (XML) standard to facilitate future electronic transfer of cancer reports from hospitals to the Cancer Registry. A minimum data set template for reporting colorectal carcinoma resection specimens and the Extensible Markup Language standard have been established. The template is based on international guidelines and classification systems. For most key parameters, pull-down menus with predefined alternatives have been constructed. The template is fully integrated into software being used by all pathology laboratories in Norway. Since the introduction of the template in April 2005, the template had been used for reporting 430 (93%) of 462 colorectal resections at 2 pilot laboratories (Akershus University Hospital [Lørenskog, Norway] and Stavanger, University Hospital [Stavanger, Norway]), demonstrating that high and consistent quality can be ascertained. Pathologists have found the template both time saving and user friendly. The template is now gradually implemented nationwide. PMID:18187180

  2. Adjuvant Brachytherapy Removes Survival Disadvantage of Local Disease Extension in Stage IIIC Endometrial Cancer: A SEER Registry Analysis

    International Nuclear Information System (INIS)

    Purpose: To assess the role of radiotherapy (RT) in women with Stage IIIC endometrial cancer. Methods and Materials: The 17-registry Survival, Epidemiology, and End Results (SEER) database was searched for patients with lymph node-positive non-Stage IV epithelial endometrial cancer diagnosed and treated between 1988 and 1998. Two subgroups were identified: those with organ-confined Stage IIIC endometrial cancer and those with Stage IIIC endometrial cancer with direct extension of the primary tumor. RT was coded as external beam RT (EBRT) or brachytherapy (BT). Observed survival (OS) was reported with a minimum of 5 years of follow-up; the survival curves were compared using the log-rank test. Results: The therapy data revealed 611 women with Stage IIIC endometrial cancer during this period. Of these women, 51% were treated with adjuvant EBRT, 21% with EBRT and BT, and 28% with no additional RT (NAT). Of the 611 patients, 293 had organ-confined Stage IIIC endometrial cancer and 318 patients had Stage IIIC endometrial cancer with direct extension of the primary tumor. The 5-year OS rate for all patients was 40% with NAT, 56% after EBRT, and 64% after EBRT/BT. Adjuvant RT improved survival compared with NAT (p <0.001). In patients with organ-confined Stage IIIC endometrial cancer, the 5-year OS rate was 50% for NAT, 64% for EBRT, and 67% for EBRT/BT. Again, adjuvant RT contributed to improved survival compared with NAT (p = 0.02). In patients with Stage IIIC endometrial cancer and direct tumor extension, the 5-year OS rate was 34% for NAT, 47% for EBRT, and 63% for EBRT/BT. RT improved OS compared with NAT (p <0.001). Also, in this high-risk subgroup, adding BT to EBRT was superior to EBRT alone (p = 0.002). Conclusion: Women with Stage IIIC endometrial cancer receiving adjuvant EBRT and EBRT/BT had improved OS compared with patients receiving NAT. When direct extension of the primary tumor was present, the addition of BT to EBRT was even more beneficial

  3. The incidence rate of corpus uteri cancer among females in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

    Directory of Open Access Journals (Sweden)

    Alghamdi IG

    2014-01-01

    Full Text Available Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, UK; 2Ministry of Health, General Directorate of Health Affairs, Al-Baha, Kingdom of Saudi Arabia; 3Research and Development, Lincoln Hospital, Lincolnshire Hospitals NHS Trust, Lincoln, UK Background: The present study reviews the epidemiological data on corpus uteri cancer among Saudi women, including its frequency, crude incidence rate, and age-standardized incidence rate (ASIR, adjusted by region and year of diagnosis. Methods: A retrospective, descriptive epidemiological analysis was conducted of all the corpus uteri cancer cases recorded in the Saudi Cancer Registry between January 2001 and December 2008. The statistical analyses were performed using descriptive statistics, analysis of variance, Poisson regression, and a simple linear model. Results: A total of 1,060 corpus uteri cancer cases were included. Women aged 60–74 years of age were most affected by the disease. The region of Riyadh in Saudi Arabia had the highest overall ASIR, at 4.4 cases per 100,000 female patients, followed by the eastern region, at 4.2, and Makkah, at 3.7. Jazan, Najran, and Qassim had the lowest average ASIRs, ranging from 0.8 to 1.4. A Poisson regression model using Jazan as the reference revealed that the corpus uteri cancer incidence rate ratio was significantly higher for the regions of Makkah, at 16.5 times (95% confidence interval [CI]: 8.0–23.0, followed by Riyadh, at 16.0 times (95% CI: 9.0–22.0, and the eastern region, at 9.9 times (95% CI: 5.6–17.6. The northern region experienced the highest changes in ASIRs of corpus uteri cancer among female Saudi patients between 2001 and 2008. Conclusion: There was a slight increase in the crude incidence rates and ASIRs for corpus uteri cancer in Saudi Arabia between 2001 and 2008. Older Saudi women were most affected by the disease. Riyadh, the eastern region, and Makkah

  4. Socioeconomic disparity in breast cancer detection in Hong Kong--a high income city: retrospective epidemiological study using the Breast Cancer Registry.

    Directory of Open Access Journals (Sweden)

    Josette Sin Yee Chor

    Full Text Available BACKGROUND: It is not known whether socioeconomic disparities affect the detection of breast cancer in Asian countries where the incidence of breast cancer is a rising trend. In this study, we explore the socioeconomic profiles of women and the stage of the disease at the time of diagnosis in breast cancer patients aged 40 or over in Hong Kong. METHOD: During the period 2008 to 2011, 5393 breast cancer patients registered with the Hong Kong Breast Cancer Registry. Participants and their clinicians were asked to complete standardised questionnaires including patient socio-demographics, health history and risk factors, the course of the disease, post-treatment physical discomfort and psychosocial impact, follow-up recurrence and survival status. RESULTS: Monthly household incomes, educational levels and the practice of regular screening are independently associated with the stage of the disease at diagnosis. Higher socioeconomic status and a higher educational level were associated with an earlier stage of the disease at the time of diagnosis. Yearly clinical examinations, ultrasound and mammographic screening every 2 to 3 years were significantly associated with the earlier detection of breast cancer. CONCLUSION: There were socioeconomic disparities among Hong Kong women who were found to have breast cancer. Population-based screening policies, including raising awareness among women at risk, should be implemented.

  5. Evaluation of an Automated Information Extraction Tool for Imaging Data Elements to Populate a Breast Cancer Screening Registry.

    Science.gov (United States)

    Lacson, Ronilda; Harris, Kimberly; Brawarsky, Phyllis; Tosteson, Tor D; Onega, Tracy; Tosteson, Anna N A; Kaye, Abby; Gonzalez, Irina; Birdwell, Robyn; Haas, Jennifer S

    2015-10-01

    Breast cancer screening is central to early breast cancer detection. Identifying and monitoring process measures for screening is a focus of the National Cancer Institute's Population-based Research Optimizing Screening through Personalized Regimens (PROSPR) initiative, which requires participating centers to report structured data across the cancer screening continuum. We evaluate the accuracy of automated information extraction of imaging findings from radiology reports, which are available as unstructured text. We present prevalence estimates of imaging findings for breast imaging received by women who obtained care in a primary care network participating in PROSPR (n = 139,953 radiology reports) and compared automatically extracted data elements to a "gold standard" based on manual review for a validation sample of 941 randomly selected radiology reports, including mammograms, digital breast tomosynthesis, ultrasound, and magnetic resonance imaging (MRI). The prevalence of imaging findings vary by data element and modality (e.g., suspicious calcification noted in 2.6% of screening mammograms, 12.1% of diagnostic mammograms, and 9.4% of tomosynthesis exams). In the validation sample, the accuracy of identifying imaging findings, including suspicious calcifications, masses, and architectural distortion (on mammogram and tomosynthesis); masses, cysts, non-mass enhancement, and enhancing foci (on MRI); and masses and cysts (on ultrasound), range from 0.8 to1.0 for recall, precision, and F-measure. Information extraction tools can be used for accurate documentation of imaging findings as structured data elements from text reports for a variety of breast imaging modalities. These data can be used to populate screening registries to help elucidate more effective breast cancer screening processes. PMID:25561069

  6. Cancer net survival on registry data: use of the new unbiased Pohar-Perme estimator and magnitude of the bias with the classical methods.

    Science.gov (United States)

    Roche, Laurent; Danieli, Coraline; Belot, Aurélien; Grosclaude, Pascale; Bouvier, Anne-Marie; Velten, Michel; Iwaz, Jean; Remontet, Laurent; Bossard, Nadine

    2013-05-15

    Net survival, the survival which might occur if cancer was the only cause of death, is a major epidemiological indicator required for international or temporal comparisons. Recent findings have shown that all classical methods used for routine estimation of net survival from cancer-registry data, sometimes called "relative-survival methods," provide biased estimates. Meanwhile, an unbiased estimator, the Pohar-Perme estimator (PPE), was recently proposed. Using real data, we investigated the magnitude of the errors made by four "relative-survival" methods (Ederer I, Hakulinen, Ederer II and a univariable regression model) vs. PPE as reference and examined the influence of time of follow-up, cancer prognosis, and age on the errors made. The data concerned seven cancer sites (2,51,316 cases) collected by FRANCIM cancer registries. Net survivals were estimated at 5, 10 and 15 years postdiagnosis. At 5 years, the errors were generally small. At 10 years, in good-prognosis cancers, the errors made in nonstandardized estimates with all classical methods were generally great (+2.7 to +9% points in prostate cancer) and increased in age-class estimations (vs. 5-year ones). At 15 years, in bad- or average-prognosis cancers, the errors were often substantial whatever the nature of the estimation. In good-prognosis cancers, the errors in nonstandardized estimates of all classical methods were great and sometimes very important. With all classical methods, great errors occurred in age-class estimates resulting in errors in age-standardized estimates (+0.4 to +3.2% points in breast cancer). In estimating net survival, cancer registries should abandon all classical methods and adopt the new Pohar-Perme estimator. PMID:22961565

  7. The Basic Facts of Korean Breast Cancer in 2012: Results from a Nationwide Survey and Breast Cancer Registry Database

    OpenAIRE

    Kim, Zisun; Min, Sun Young; Yoon, Chan Seok; Jung, Kyu-Won; Ko, Beom Seok; Kang, Eunyoung; Nam, Seok Jin; Lee, Seokwon; Hur, Min Hee; ,

    2015-01-01

    The Korean Breast Cancer Society has constructed a nationwide breast cancer database through utilization of an online registration program. We have reported the basic facts about breast cancer in Korea in 2012, and analyzed the changing patterns in the clinical characteristics and management of breast cancer in Korea over the last 10 years. Data on patients newly diagnosed with breast cancer were collected for the year 2012 from 97 hospitals and clinics nationwide using a questionnaire survey...

  8. Disparities in Lung Cancer Care and Outcomes among Elderly in a Medically Underserved State Population-A Cancer Registry-Linked Database Study.

    Science.gov (United States)

    Nadpara, Pramit A; Madhavan, S Suresh; Tworek, Cindy

    2016-04-01

    Despite availability of guidelines for lung cancer care, variations in lung cancer care among the elderly exist across the nation and are a cause for concern in rural and medically underserved areas. Therefore, the purpose of this study was to evaluate the patterns of lung cancer care and associated health outcomes among elderly residing in a rural and medically underserved area. The authors identified 1924 elderly lung cancer patients from the West Virginia Cancer Registry-Medicare linked database (2002-2007) and categorized them by receipt of guideline-concordant (appropriate and timely) care using guidelines from the American College of Chest Physicians, British Thoracic Society, and the RAND Corporation. Hierarchical generalized logistic models were constructed to identify variables associated with receipt of guideline-concordant care. Kaplan-Meier analysis and log-rank test were used to compare 3-year survival outcomes. Multivariate Cox proportional hazards models were constructed to estimate lung cancer mortality risk associated with nonreceipt of guideline-concordant care. Although guideline-concordant appropriate care was received by fewer than half of all patients (46.5%), of those receiving care, 78.7% received it in a timely manner. Delays in diagnosis and treatment varied significantly. Survival outcomes significantly improved with appropriate care (799 vs. 366 days; P≤0.05), but did not improve with timely care. This study highlights the critical need to address disparities in receipt of guideline-concordant lung cancer care among the elderly residing in rural and medically underserved areas. Although lung cancer diagnostic and management services are covered under the Medicare program, underutilization of these services is a concern. (Population Health Management 2016;19:109-119). PMID:26086239

  9. Evaluation of an ICD-10 algorithm to detect osteonecrosis of the jaw among cancer patients in the Danish National Registry of Patients

    DEFF Research Database (Denmark)

    Ehrenstein, Vera; Gammelager, Henrik; Schiødt, Morten;

    2015-01-01

    PURPOSE: This study aimed to validate a predefined algorithm for osteonecrosis of the jaw (ONJ) among cancer patients in the Danish National Registry of Patients and to assess the nature of clinical information recorded in medical charts of ONJ patients. METHODS: We identified potential ONJ cases......%-81%]). CONCLUSIONS: The predefined algorithm is not adequate for monitoring ONJ in pharmacovigilance studies. Additional case-finding approaches, coupled with adjudication, are necessary to estimate ONJ incidence accurately....

  10. Mammographic density and breast cancer: a comparison of related and unrelated controls in the Breast Cancer Family Registry

    OpenAIRE

    Linton, Linda; Martin, Lisa J.; Li, Qing; Huszti, Ella; Minkin, Salomon; John, Esther M.; Rommens, Johanna; Paterson, Andrew D.; Boyd, Norman F

    2013-01-01

    Introduction Percent mammographic density (PMD) is a strong and highly heritable risk factor for breast cancer. Studies of the role of PMD in familial breast cancer may require controls, such as the sisters of cases, selected from the same 'risk set' as the cases. The use of sister controls would allow control for factors that have been shown to influence risk of breast cancer such as race/ethnicity, socioeconomic status and a family history of breast cancer, but may introduce 'overmatching' ...

  11. Incidence rate of ovarian cancer cases in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

    Directory of Open Access Journals (Sweden)

    Alghamdi IG

    2014-06-01

    Full Text Available Ibrahim G Alghamdi,1,2 Issam I Hussain,1 Mohamed S Alghamdi,3 Mansour M Alghamdi,4 Ahlam A Dohal,4 Mohammed A El-Sheemy51School of Life Sciences, University of Lincoln, Brayford Pool, Lincoln, UK; 2Al-Baha University, Kingdom of Saudia Arabia; 3Ministry of Health, General Directorate of Health Affairs, Al-Baha, Kingdom of Saudi Arabia; 4King Fahad Specialist Hospital–Dammam, Kingdom of Saudi Arabia; 5Department of Research and Development, Lincoln Hospital, United Lincolnshire Hospitals, National Health Service Trust, Lincoln, UKPurpose: This study provides descriptive epidemiological data, such as the percentage of cases diagnosed, crude incidence rate (CIR, and age-standardized incidence rate (ASIR of ovarian cancer in Saudi Arabia from 2001–2008. Patients and methods: A retrospective descriptive epidemiological analysis of all ovarian cancer cases recorded in the Saudi Cancer Registry (SCR from January 2001–December 2008 was performed. The data were analyzed using descriptive statistics, analysis of variance tests, Poisson regression, and simple linear modeling.Results: A total of 991 ovarian cancer cases were recorded in the SCR from January 2001–December 2008. The region of Riyadh had the highest overall ASIR at 3.3 cases per 100,000 women, followed by the Jouf and Asir regions at 3.13 and 2.96 cases per 100,000 women. However, Hail and Jazan had the lowest rates at 1.4 and 0.6 cases per 100,000 women, respectively. Compared to Jazan, the incidence rate ratio for the number of ovarian cancer cases was significantly higher (P<0.001 in the Makkah region at 6.4 (95% confidence interval [CI]: 4.13–9.83, followed by Riyadh at 6.3 (95% CI: 4.10–9.82, and the eastern region of Saudi Arabia at 4.52 (95% CI: 2.93–6.98. The predicted annual CIR and ASIR for ovarian cancer in Saudi Arabia could be defined by the equations 0.9 + (0.07× years and 1.71 + (0.09× years, respectively.Conclusion: We observed a slight increase in the CIRs and

  12. The incidence rate of female breast cancer in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

    Directory of Open Access Journals (Sweden)

    Alghamdi IG

    2013-10-01

    Full Text Available Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, United Kingdom; 2Ministry of Health, General Directorate of Health Affairs Al-Baha, Kingdom of Saudi Arabia; 3Lincoln Hospital, Research and Development, United Lincolnshire Hospitals, National Health Service Trust, Lincoln, United Kingdom Background: This study presents descriptive epidemiological data related to breast cancer cases diagnosed from 2001 to 2008 among Saudi women, including the frequency and percentage of cases, the crude incidence rate (CIR, and the age-standardized incidence rate (ASIR, adjusted by the region and year of diagnosis. Methods: This is a retrospective descriptive epidemiological study of all Saudi female breast cancer cases from 2001 to 2008. The statistical analyses were conducted using descriptive statistics, a linear regression model, and analysis of variance with the Statistical Package for the Social Sciences version 20 (IBM Corporation, Armonk, NY, USA. Results: A total of 6,922 female breast cancer cases were recorded in the Saudi Cancer Registry from 2001 to 2008. The highest overall percentages (38.6% and 31.2% of female breast cancer cases were documented in women who were 30–44 and 45–59 years of age, respectively. The eastern region of Saudi Arabia had the highest overall ASIR, at 26.6 per 100,000 women, followed by Riyadh at 20.5 and Makkah at 19.4. Jazan, Baha, and Asir had the lowest average ASIRs, at 4.8, 6.1, and 7.3 per 100,000 women, respectively. The region of Jouf (24.2%; CIR 11.2, ASIR 17.2 had the highest changes in CIR and ASIR from 2001 to 2008. While Qassim, Jazan and Tabuk recorded down-trending rates with negative values. Conclusion: There was a significant increase in the CIRs and ASIRs for female breast cancer between 2001 and 2008. The majority of breast cancer cases occurred among younger women. The region of Jouf had the greatest significant

  13. [Change in the occurrence of breast cancer in hospital registries (1980-2000)].

    Science.gov (United States)

    Belicza, Mladen; Lenicek, Tanja; Glasnović, Margareta; Elez, Martina; Gladić, Vedrana; Marton, Ingrid; Zuteković, Suncana; Jurlina, Hrvoje; Kusić, Zvonko; Cvrtila, Drago; Strnad, Marija; Tomas, Davor; Cupić, Hrvoje; Kruslin, Bozo

    2002-01-01

    The aim of our retrospective study was to analyze distribution of histological types, age of patients and hormonal dependency of breast cancer cases in the period 1980-2000 using computer database "Thanatos". This period was divided with regard to the war into a pre-war (1980-1990), war (1991-1995) and post-war period (1996-2000). We also paid attention to the Chernobyl accident (pre-Chernobyl from 1980-1986 and post-Chernobyl from 1987-2000). Special attention was focused on the period during the war mainly due to the fact that very little data exist in literature dealing with the war as a stress factor that may have induced and promoted carcinogenesis. During this twenty-one year period 2296 patients were diagnosed with breast cancer. In the female population of 2274, 2228 (98%) of these were ductal and only 46 (2%) were invasive lobular carcinomas. In all of the male cases (22) the cancer was pathohistologically verified as the invasive ductal type. The male:female ratio was 1:103. Comparing the pre-war and war periods we found a more than double increase in the male:female ratio (from 1:131 to 1:66). We observed similar results when we looked at the period after the Chernobyl incident where the ratio increased from 1:139 to 1:79. When we analyzed the distribution of histological types we found a significant increase in lobular carcinomas during the post-war period, from 1.1% to 5.5%; this increase was less significant for the post-Chernobyl period (1.0% to 3.3%). The average age of the patients with invasive ductal carcinomas increased from 56.7 yrs during the pre-war period to 59.7 yrs during the war and finally to 61.1 yrs during the post-war period. The average age of males with breast cancer decreased from 63.6 and 63.5 during the pre-war and war periods to 58.8 yrs during the post-war period. These results suggest that the war could have influenced the shift in the age of occurrence of breast cancer in both sexes appearing in younger males and in females

  14. The epidemiology of gastrointestinal stromal tumors in Taiwan, 1998–2008: a nation-wide cancer registry-based study

    International Nuclear Information System (INIS)

    To investigate the incidence of gastrointestinal stromal tumors (GISTs) in Taiwan and the impact of imatinib on the overall survival (OS) of GIST patients. GISTs were identified from the Taiwan Cancer Registry (TCR) from 1998 to 2008. The age-adjusted incidence rates and the observed OS rates were calculated. Cox proportional hazards models were applied to examine the mortality risk in three time periods (1998–2001, 2002–2004, 2005–2008) according to the application and availability of imatinib. From 1998 to 2008, 2,986 GISTs were diagnosed in Taiwan. The incidence increased from 1.13 per 100,000 in 1998 to 1.97 per 100,000 in 2008. The most common sites were stomach (47-59%), small intestine (31-38%), and colon/rectum (6-9%). The 5-year observed OS was 66.5% (60.3% for men, 74.2% for women, P < .0001). GISTs in the stomach had a better 5-year observed OS (69.4%) than those in the small intestine (65.1%) (P < .0001). The outcome of GIST improved significantly after the more widespread use of imatinib; the 5-year observed OS increased from 58.9% during 1998–2001 to 70.2% during 2005–2008 (P < .0001). Younger age, female sex, stomach location, and later diagnostic years were independent predictors of a better survival. The incidence of GIST has been increasing in Taiwan, partially due to the advancement of diagnostic technology/method and the increased awareness by physicians. The outcome of GIST has improved significantly with the availability and the wider use of imatinib

  15. ABRAXAS (FAM175A) and Breast Cancer Susceptibility: No Evidence of Association in the Breast Cancer Family Registry

    OpenAIRE

    Anne-Laure Renault; Fabienne Lesueur; Yan Coulombe; Stéphane Gobeil; Penny Soucy; Yosr Hamdi; Sylvie Desjardins; Florence Le Calvez-Kelm; Maxime Vallée; Catherine Voegele; Hopper, John L.; Andrulis, Irene L.; Southey, Melissa C.; John, Esther M.; Jean-Yves Masson

    2016-01-01

    Approximately half of the familial aggregation of breast cancer remains unexplained. This proportion is less for early-onset disease where familial aggregation is greater, suggesting that other susceptibility genes remain to be discovered. The majority of known breast cancer susceptibility genes are involved in the DNA double-strand break repair pathway. ABRAXAS is involved in this pathway and mutations in this gene impair BRCA1 recruitment to DNA damage foci and increase cell sensitivity to ...

  16. Quality of Life and Mortality of Long-Term Colorectal Cancer Survivors in the Seattle Colorectal Cancer Family Registry

    OpenAIRE

    Adams, Scott V.; Rachel Ceballos; Newcomb, Polly A.

    2016-01-01

    Background and Aim Because most colorectal cancer patients survive beyond five years, understanding quality of life among these long-term survivors is essential to providing comprehensive survivor care. We sought to identify personal characteristics associated with reported quality of life in colorectal cancer survivors, and sub-groups of survivors potentially vulnerable to very low quality of life. Methods We assessed quality of life using the Veterans RAND 12-item Health Survey within a pop...

  17. Incidence of cancer in children residing in ten jurisdictions of the Mexican Republic: importance of the Cancer registry (a population-based study)

    International Nuclear Information System (INIS)

    causes of cancer in children. Due to the little that is known about the incidence of cancer in Mexican children, it will be necessary to develop a national program to establish a cancer registry for the whole of the country

  18. Are there disparities in the presentation, treatment and outcomes of patients diagnosed with medullary thyroid cancer?—An analysis of 634 patients from the California Cancer Registry

    Science.gov (United States)

    Cox, Christine; Chen, Yingjia; Cress, Rosemary; Semrad, Alison M.; Semrad, Thomas; Gosnell, Jessica E.

    2016-01-01

    Background Race, gender and socioeconomic disparities have been suggested to adversely influence stage at presentation, treatment options and outcomes in patients with cancer. Underserved minorities and those with a low socioeconomic status (SES) present with more advanced disease and have worse outcomes for differentiated thyroid cancer, but this relationship has never been evaluated for medullary thyroid cancer (MTC). Methods We used the California Cancer Registry (CCR) to evaluate disparities in the presentation, treatment and outcomes of patients diagnosed with MTC. Results We identified 634 patients with MTC diagnosed between 1988 and 2011. Almost everyone (85%) underwent thyroidectomy with 50% having a central lymph node dissection (CLND). There were no statistically significant differences by age, race or SES in mean tumor size or the proportion of patients diagnosed with localized disease, but men were diagnosed with larger tumors than women and were less likely to be diagnosed at a localized stage. Younger patients and women were more likely to be treated with a thyroidectomy. There were no statistically significant differences in surgical treatment by race or SES. Patients in the highest SES category had a better overall survival, but not disease specific survival, than those in the lowest SES (HR =0.3, CI =0.1–0.7). Patients treated with thyroidectomy had a better overall and cause specific survival, but the effect of CLND was not statistically significant after adjustment for other factors. Conclusions In MTC, we did not find that race, gender or SES influenced the presentation, treatment or outcomes of patients with MTC. Men with MTC present with larger tumors and are less likely to have localized disease. Half of the MTC patients in California do not undergo a CLND at the time of thyroidectomy, which may suggest a lack appropriate care across a range of healthcare systems. PMID:27563561

  19. Stroke Trials Registry

    Science.gov (United States)

    ... News About Neurology Image Library Search The Internet Stroke Center Trials Registry Clinical Trials Interventions Conditions Sponsors ... a clinical trial near you Welcome to the Stroke Trials Registry Our registry of clinical trials in ...

  20. Clinical Case Registries (CCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...

  1. Centralized databases available for describing primary brain tumor incidence, survival, and treatment: Central Brain Tumor Registry of the United States; Surveillance, Epidemiology, and End Results; and National Cancer Data Base.

    OpenAIRE

    Davis, F. G.; McCarthy, B J; Berger, M.S.

    1999-01-01

    Characteristics of three databases--the Central Brain Tumor Registry of the United States (CBTRUS) database; the Surveillance, Epidemiology and End Results (SEER) database; and the National Cancer Data Base (NCDB)--containing information on primary brain tumors are discussed. The recently developed population-based CBTRUS database comprises incidence data on all primary brain tumors from 11 collaborating state registries; however, follow-up data are not available. SEER, the population-based g...

  2. Cancer Incidence in Golestan Province : Report of an Ongoing Population-based Cancer Registry in Iran between 2004 and 2008

    NARCIS (Netherlands)

    Roshandel, Gholamreza; Sadjadi, Alireza; Aarabi, Mohsen; Keshtkar, Abbasali; Sedaghat, Seyed Mehdi; Nouraie, Seyed Mehdi; Semnani, Shahryar; Malekzadeh, Reza

    2012-01-01

    Background: Golestan Province, at the western end of the Asian esophageal cancer (EC) belt in northeastern Iran, was reported to have one of the highest worldwide rates of EC in the 1970s. We have previously shown a declining incidence of EC in Golestan during the last decades. This study reports ad

  3. The spatial distribution of cancer incidence in fars province: A GIS-Based analysis of cancer registry data

    Directory of Open Access Journals (Sweden)

    Ali Goli

    2013-01-01

    Conclusions: Analysis of the spatial distribution of cancer shows significant differences from year to year and between different areas. However, a clear spatial autocorrelation is observed, which can be of great interest and importance to researchers for future epidemiological studies, and to policymakers for applying preventive measures.

  4. Measuring the effect of improvement in methodological techniques on data collection in the Gharbiah population-based cancer registry in Egypt: Implications for other Low- and Middle-Income Countries.

    Science.gov (United States)

    Smith, Brittney L; Ramadan, Mohamed; Corley, Brittany; Hablas, Ahmed; Seifeldein, Ibrahim A; Soliman, Amr S

    2015-12-01

    The purpose of this study was to describe and quantify procedures and methods that maximized the efficiency of the Gharbiah Cancer Registry (GPCR), the only population-based cancer registry in Egypt. The procedures and measures included a locally-developed software program to translate names from Arabic to English, a new national ID number for demographic and occupational information, and linkage of cancer cases to new electronic mortality records of the Ministry of Health. Data was compiled from the 34,058 cases from the registry for the years 1999-2007. Cases and registry variables about demographic and clinical information were reviewed by year to assess trends associated with each new method or procedure during the study period. The introduction of the name translation software in conjunction with other demographic variables increased the identification of detected duplicates from 23.4% to 78.1%. Use of the national ID increased the proportion of cases with occupation information from 27% to 89%. Records with complete mortality information increased from 18% to 43%. Proportion of cases that came from death certificate only, decreased from 9.8% to 4.7%. Overall, the study revealed that introducing and utilizing local and culture-specific methodological changes, software, and electronic non-cancer databases had a significant impact on data quality and completeness. This study may have translational implications for improving the quality of cancer registries in LMICs considering the emerging advances in electronic databases and utilization of health software and computerization of data. PMID:26590335

  5. Meat intake, cooking methods, dietary carcinogens, and colorectal cancer risk: findings from the Colorectal Cancer Family Registry

    OpenAIRE

    Joshi, Amit D.; Kim, Andre; Lewinger, Juan Pablo; Ulrich, Cornelia M.; Potter, John D; Cotterchio, Michelle; Le Marchand, Loic; Stern, Mariana C.

    2015-01-01

    Diets high in red meat and processed meats are established colorectal cancer (CRC) risk factors. However, it is still not well understood what explains this association. We conducted comprehensive analyses of CRC risk and red meat and poultry intakes, taking into account cooking methods, level of doneness, estimated intakes of heterocyclic amines (HCAs) that accumulate during meat cooking, tumor location, and tumor mismatch repair proficiency (MMR) status. We analyzed food frequency and porti...

  6. Patterns of care in geriatric cancer patients – An audit from a rural based hospital cancer registry in Kerala

    Directory of Open Access Journals (Sweden)

    V M Patil

    2015-01-01

    Full Text Available Background: There is deficit of data from India on elderly patients with cancer. Comprehensive geriatric assessment may lead to a better decision making capacity in this population. However, routine implementation of such assessment is resource consuming. Aim: The aim of this study was to determine the patterns of care in elderly patients treated at a tertiary rural cancer center in India. Materials And Methods: All patients with age 70 or above with solid tumors without any definitive treatment prior to the registration at our center and registered between 01/01/2010 and 31/12/2011 were selected for this study. The baseline demographic pattern and the pattern of care of treatment were analyzed. SPSS version 16 (IBM Inc, Armonk, New York, U.S. was used for analysis. Descriptive data are provided. Results: A total of 761 patients were evaluable subject to the aforementioned inclusion criteria. The median age of this cohort was 75 years (70-95 years. The most frequent primary sites of malignancies in 451 males were head neck (32.4%, lung (23.3% and gastrointestinal (23.3%. In 310 females, the most common sites were head neck (31.6%, gynecological (18.4% and gastrointestinal (24.5%. 228 (30% of the patients had localized disease, 376 (49.4% had loco-regionally advanced disease and 145 (19.1% had distant metastases at presentation. 334 (46.32% of patients were treated with curative intent. On logistic regression analysis the factors that predicted use of curative intent treatment were age <75 years, performance status 0-1, primary site and clinical extent of disease. Conclusion: Routine comprehensive geriatric assessment needs to be implemented in our setting as almost 50% of our geriatric patients undergo curative intent treatment.

  7. Survival improvements associated with access to biological agents: Results from the South Australian (SA) metastatic colorectal cancer (mCRC) registry.

    Science.gov (United States)

    Tomita, Yoko; Karapetis, Christos S; Ullah, Shahid; Townsend, Amanda R; Roder, David; Beeke, Carol; Roy, Amitesh C; Padbury, Rob; Price, Timothy J

    2016-01-01

    Background Randomized controlled trials evaluating biological therapy have shown improvements in survival from metastatic colorectal cancer (mCRC). Subjects in the trials represent a selected proportion of mCRC patients. We have the potential to assess the impact of biological therapy on mCRC outcomes, particularly the effect of bevacizumab, from a population-based clinical registry by comparing two time cohorts with differences in therapy accessibility. Material and methods A retrospective cohort study was performed by analyzing the South Australian (SA) mCRC registry data based on diagnosis in two time periods: 1 February 2006-31 May 2009 (Cohort A) versus 1 June 2009-30 June 2014 (Cohort B). The demarcation for these cohorts was chosen to reflect the change in accessibility of bevacizumab from July 2009. Results Between February 2006 and June 2014, 3308 patients were identified through the SA mCRC registry: 1464 (44%) in Cohort A and 1844 (56%) in Cohort B. 61 and 59% patients in Cohort A and B, respectively received systemic therapy (p = 0.26). Major differences in clinical characteristics were: biological therapy use 18 versus 33% (p rise in bevacizumab administration was observed in Cohort B. Its use in first-line therapy remained relatively low even after the reimbursement, potentially reflecting real world practice where comorbidities, primary in-situ and age may contraindicate its use. mOS improvement over time was attributed to increased access to biological therapy, especially bevacizumab and possibly advance in peri-operative and supportive care. PMID:26878155

  8. Adherence to the World Cancer Research Fund/American Institute for Cancer Research lifestyle recommendations in colorectal cancer survivors : Results of the PROFILES registry

    NARCIS (Netherlands)

    Winkels, Renate M; van Lee, Linde; Beijer, Sandra; Bours, Martijn J; van Duijnhoven, Fränzel J B; Geelen, Anouk; Hoedjes, Meeke; Mols, F.; de Vries, Jeanne; Weijenberg, Matty P; Kampman, Ellen

    2016-01-01

    We examined adherence to the eight The World Cancer Research Foundation/American Institute for Cancer Research (WCRF/AICR) recommendations on diet, physical activity, and body weight among colorectal cancer survivors, and whether adherence was associated with intention to eat healthy and with the ne

  9. EMI Registry Design

    CERN Document Server

    Memon, S

    2011-01-01

    Grid services are the fundamental building blocks of today's Distributed Computing Infrastructures (DCI). The discovery of services in the DCI is a primary function that is a precursor to other tasks such as workload and data management. In this context, a service registry can be used to fulfil such a requirement. Existing service registries, such as the ARC Information Index or UNICORE Registry, are examples that have proven themselves in production environments. Such implementations provide a centralized service registry, however, todays DCIs, such as EGI, are based on a federation model. It is therefore necessary for the service registry to mirror such a model in order for it to seamlessly fit into the operational and management requirements - a DCI built using federated approach. This document presents an architecture for a federated service registry and a prototype based on this architecture, the EMI Registry. Special attention is given to how the federated service registry is robust to environment failu...

  10. Beliefs about optimal age and screening frequency predict breast screening adherence in a prospective study of female relatives from the Ontario Site of the Breast Cancer Family Registry

    Directory of Open Access Journals (Sweden)

    Ritvo Paul

    2012-07-01

    Full Text Available Abstract Background Although few studies have linked cognitive variables with adherence to mammography screening in women with family histories of breast and/or ovarian cancer, research studies suggest cognitive phenomena can be powerful adherence predictors. Methods This prospective study included 858 women aged 30 to 71 years from the Ontario site of the Breast Cancer Family Registry with at least one first-degree relative diagnosed with breast and/or ovarian cancer. Data on beliefs about breast cancer screening and use of mammography were obtained from annual telephone interviews spanning three consecutive years. Self-reported mammogram dates were confirmed with medical imaging reports. Associations between beliefs about breast cancer screening and adherence with annual mammography were estimated using polytomous logistic regression models corrected for familial correlation. Models compared adherers (N = 329 with late-screeners (N = 382 and never-screeners (N = 147. Results Women who believed mammography screening should occur annually were more likely to adhere to annual screening recommendations than women who believed it should happen less often (OR: 5.02; 95% CI: 2.97-8.49 for adherers versus late-screeners; OR: 6.82; 95% CI: 3.29-14.16 for adherers versus never-screeners. Women who believed mammography screening should start at or before age 50 (rather than after (OR: 9.72; 95% CI: 3.26-29.02 were significantly more likely to adhere when compared with never-screeners. Conclusions Study results suggest that women with a family history of breast cancer should be strongly communicated recommendations about initial age of screening and screening intervals as related beliefs significantly predict adequate adherence.

  11. Neoadjuvant Radiation Is Associated With Improved Survival in Patients With Resectable Pancreatic Cancer: An Analysis of Data From the Surveillance, Epidemiology, and End Results (SEER) Registry

    International Nuclear Information System (INIS)

    Purpose: Cancer of the exocrine pancreas is the fifth leading cause of cancer death in the United States. Neoadjuvant chemoradiation has been investigated in several trials as a strategy for downstaging locally advanced disease to resectability. The aim of the present study is to examine the effect of neoadjuvant radiation therapy (RT) vs. other treatments on long-term survival for patients with resectable pancreatic cancer in a large population-based sample group. Methods and Materials: The Surveillance, Epidemiology, and End Results (SEER) registry database (1994-2003) was queried for cases of surgically resected pancreatic cancer. Retrospective analysis was performed. The endpoint of the study was overall survival. Results: Using Kaplan-Meier analysis we found that the median overall survival of patients receiving neoadjuvant RT was 23 months vs. 12 months with no RT and 17 months with adjuvant RT. Using Cox regression and controlling for independent covariates (age, sex, stage, grade, and year of diagnosis), we found that neoadjuvant RT results in significantly higher rates of survival than other treatments (hazard ratio [HR], 0.55; 95% confidence interval, 0.38-0.79; p = 0.001). Specifically comparing adjuvant with neoadjuvant RT, we found a significantly lower HR for death in patients receiving neoadjuvant RT rather than adjuvant RT (HR, 0.63; 95% confidence interval, 0.45-0.90; p = 0.03). Conclusions: This analysis of SEER data showed a survival benefit for the use of neoadjuvant RT over surgery alone or surgery with adjuvant RT in treating pancreatic cancer. Therapeutic strategies that use neoadjuvant RT should be further explored for patients with resectable pancreatic cancer

  12. Migrant breast cancer patients and their participation in genetic counseling: results from a registry-based study

    OpenAIRE

    Baars, J. E.; van Dulmen, A M; Velthuizen, M. E.; Theunissen, E. B. M.; Vrouenraets, B.C.; Kimmings, A.N.; Dalen, T. van; van Ooijen, B; Witkamp, A.J.; van der Aa, M. A.; Ausems, M.G.E.M.

    2016-01-01

    Certain ethnic groups seem to have less access to cancer genetic counseling. Our study was to investigate the participation in cancer genetic counseling among migrant breast cancer patients of Turkish and Moroccan origin. Hospital medical records of Turkish and Moroccan and of a comparative group of non-Turkish/Moroccan newly diagnosed breast cancer patients were studied. All women were diagnosed between 2007 and 2012. Eligibility for genetic counseling was assessed with a checklist. A total ...

  13. Migrant breast cancer patients and their participation in genetic counseling : results from a registry-based study

    OpenAIRE

    Baars, J. E.; van Dulmen, A M; Velthuizen, M. E.; Theunissen, E. B. M.; Vrouenraets, B.C.; Kimmings, A.N.; Dalen, T. van; van Ooijen, B; Witkamp, A.J.; van der Aa, M. A.; Ausems, M.G.E.M.

    2016-01-01

    Certain ethnic groups seem to have less access to cancer genetic counseling. Our study was to investigate the participation in cancer genetic counseling among migrant breast cancer patients of Turkish and Moroccan origin. Hospital medical records of Turkish and Moroccan and of a comparative group of non-Turkish/Moroccan newly diagnosed breast cancer patients were studied. All women were diagnosed between 2007 and 2012. Eligibility for genetic counseling was assessed with a checklist. A total ...

  14. The Virtual Observatory Registry

    CERN Document Server

    Demleitner, Markus; Sidaner, Pierre Le; Plante, Raymond L

    2014-01-01

    In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources -- typically, data and services -- that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, involving about a dozen interdependent standard texts. This paper discusses the server-side aspects of the standards and their application, as regards the functional components (registries), the resource records in both format and content, the exchange of resource records between registries (harvesting), as well as the creation and management of the identifiers used in the system based on the notion of authorities. Registry record authors, registry operators or even advanced users thus receive a big picture serving as a guideline through the body of relevant standard texts. To complete this picture, we also mention comm...

  15. Incidence of chronic myeloid leukemia and patient survival: results of five French population-based cancer registries 1980-2009.

    Science.gov (United States)

    Penot, Amélie; Preux, Pierre-Marie; Le Guyader, Sandra; Collignon, Albert; Herry, Aurélie; Dufour, Vinciane; Monnereau, Alain; Woronoff, Anne-Sophie; Troussard, Xavier; Pons, Elisabeth; Bordessoule, Dominique; Maynadié, Marc

    2015-06-01

    The treatment of chronic myeloid leukemia (CML) has seen several major advances over the past 30 years, notably with the introduction of interferon followed by Bcr-Abl tyrosine kinase inhibitors. We analyzed trends in the incidence of CML and patient survival in France. All cases recorded in five population-based registries between 1980 and 2009 were included. European (ESR) and world (WSR) standardized incidence rates as well as relative survival (RS) rates were estimated. We analyzed data for 781 patients (9863/3: 13.6%; 9875/3: 82.2%; 9876/3: 4.2%). ESR was 1.02 [95% confidence interval (CI) = 0.93-1.11] and WSR was 0.81 [95% CI = 0.72-0.90]. The five RS rates among patients with Philadelphia chromosome positive (Ph+) CML were 43.7% [30.9-61.9] when diagnosed in 1980-1986, 63.8% [56.9-71.5] in 1987-1999 and 88.7% [84.5-93.0] in 2000-2009. The 8-year RS rate of patients with Ph+ CML diagnosed in 2000-2009 was 83.3% [77.5-89.4]. Therapeutic innovations have thus led to a significant increase in long-term survival in the general CML patient-population. PMID:25535815

  16. Facility Registry Service (FRS)

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Facility Registry Service (FRS) provides an integrated source of comprehensive (air, water, and waste) environmental information about facilities across EPA,...

  17. Data from a national lung cancer registry contributes to improve outcome and quality of surgery: Danish results

    DEFF Research Database (Denmark)

    Jakobsen, Erik; Palshof, Torben; Østerlind, Kell;

    2008-01-01

    improve the quality of the clinical management of lung cancer. The results of this effort are reported with special focus on surgery. METHODS: Through systematic nationwide registration a total of 24,153 patients have been included in the period 2000-2007. Indicators describing staging, surgical...... baseline data and quality parameters has been a contributory factor to significantly improve the quality of lung cancer surgery....

  18. Second primary cancer risk - the impact of applying different definitions of multiple primaries: results from a retrospective population-based cancer registry study

    OpenAIRE

    Aishah, Coyte; Morrison, David S.; McLoone, Philip

    2014-01-01

    Background: There is evidence that cancer survivors are at increased risk of second primary cancers. Changes in the prevalence of risk factors and diagnostic techniques may have affected more recent risks. Methods: We examined the incidence of second primary cancer among adults in the West of Scotland, UK, diagnosed with cancer between 2000 and 2004 (n = 57,393). We used National Cancer Institute Surveillance Epidemiology and End Results and International Agency for Research on Canc...

  19. Stereotactic body radiotherapy for centrally located early-stage non-small cell lung cancer or lung metastases from the RSSearch® patient registry

    International Nuclear Information System (INIS)

    The purpose of this study was to evaluate treatment patterns and outcomes of stereotactic body radiotherapy (SBRT) for centrally located primary non-small cell lung cancer (NSCLC) or lung metastases from the RSSearch® Patient Registry, an international, multi-center patient registry dedicated to radiosurgery and SBRT. Eligible patients included those with centrally located lung tumors clinically staged T1-T2 N0, M0, biopsy-confirmed NSCLC or lung metastases treated with SBRT between November 2004 and January 2014. Descriptive analysis was used to report patient demographics and treatment patterns. Overall survival (OS) and local control (LC) were determined using Kaplan-Meier method. Toxicity was reported using the Common Terminology Criteria for Adverse Events version 3.0. In total, 111 patients with 114 centrally located lung tumors (48 T1-T2,N0,M0 NSCLC and 66 lung metastases) were treated with SBRT at 19 academic and community-based radiotherapy centers in the US and Germany. Median follow-up was 17 months (range, 1–72). Median age was 74 years for primary NSCLC patients and 65 years for lung metastases patients (p < 0.001). SBRT dose varied from 16 – 60 Gy (median 48 Gy) delivered in 1–5 fractions (median 4 fractions). Median dose to centrally located primary NSCLC was 48 Gy compared to 37.5 Gy for lung metastases (p = 0.0001) and median BED10 was 105.6 Gy for primary NSCLC and 93.6 Gy for lung metastases (p = 0.0005). Two-year OS for T1N0M0 and T2N0M0 NSCLC was 79 and 32.1 %, respectively (p = 0.009) and 2-year OS for lung metastases was 49.6 %. Two-year LC was 76.4 and 69.8 % for primary NSCLC and lung metastases, respectively. Toxicity was low with no Grade 3 or higher acute or late toxicities. Overall, patients with centrally located primary NSCLC were older and received higher doses of SBRT than those with lung metastases. Despite these differences, LC and OS was favorable for patients with central lung tumors treated with SBRT. Reported toxicity

  20. The quality and use of two health registries in Russia

    OpenAIRE

    Vaktskjold, Arild

    2012-01-01

    Objectives. In the late 1990s, a birth registry (KBR) was set up for theborough of Mončegorsk in the Kola Peninsula and a cancer registry forArkhangelskaja Oblast (AO), both located in north-west Russia. Thework in this thesis involved an assessment of the quality and content ofthe two registries (1,2), including an estimation of the site- and genderspecificcancer incidence in AO (2). The work also involved the use ofthe birth registry to study the effect of maternal exposure to nickel atthe ...

  1. 1996-1999 Cancer Registry,Oncology Unit, Hospital Universitario Ramón González Valencia,

    Directory of Open Access Journals (Sweden)

    Andrés Mantilla Reinaud

    2006-04-01

    Full Text Available Malignant tumors are one of the first causes of mortality in Colombia.We like to establish frequency, distribution by gender andage, histology and clinical stage of malignant tumors from Unidadde Oncología del Hospital Univesitario Ramón González Valenciaduring 1996-1999. We only included subjects more than 11 years oldwith histopahological diagnosis confirmed. Data were obtained fromclinical charts. We obtained 2.011 cancer records; female were morefrequent affected (63,5%. The most frequently cancer was: cervix(17,0%, skin (14, 4%, female breast (12,2%, stomach (8,2%, lung(4,4%, prostate (2,7%, thyroid (2,4%, ovary and annexes (2,3%,rectum (2,3%, and esophagus (2,0%. The histopathologycal typeswere: Squamous cell carcinoma in cervix uteri (85.2 %, basocelularcarcinoma in skin (67,0%, invasive intraductal in female breast(78,0%, intestinal adenocarcinoma in stomach (32,1%, adenocarcinomain lung (21,3%, adenocarcinoma in prostate (76,4%, papilarcarcinoma in thyroid (43,0%, serous papilar cystadenocarcinoma inovary and annexes (10,6%, adenocarcinoma in colon and rectum(57,4%, and squamous cell carcinoma in esophagus (24,4%. Thefirst four diseases entities were preventable, reflected our need toimprove education in health promotion and prevention. We hope thatthis study will be the basis for future cancer’s risk factors studies.

  2. Data Element Registry Services

    Data.gov (United States)

    U.S. Environmental Protection Agency — Data Element Registry Services (DERS) is a resource for information about value lists (aka code sets / pick lists), data dictionaries, data elements, and EPA data...

  3. FCC Master PSAP Registry

    Data.gov (United States)

    Federal Communications Commission — In December 2003, the FCC began collecting data to build a registry of public safety answering points (PSAPs). A primary PSAP is defined as a PSAP to which 9-1-1...

  4. Incidence Patterns and Trends of non-Central Nervous System Solid Tumours in Children and Adolescents. A Collaborative Study of the Spanish Population Based Cancer Registries

    Science.gov (United States)

    Larrañaga, Nerea; Sanchez, Mª José; Ardanaz, Eva; Felipe, Saray; Marcos-Gragera, Rafael; Ramos, María; Carulla, Marià; Chirlaque, Mª Dolores; Argüelles, Marcial V.; Martos, Carmen; Mateo, Antonio; Peris-Bonet, Rafael

    2016-01-01

    Objective: To describe incidence patterns and trends in children (0-14 years) and adolescents (15-19 age-range) with solid tumours, except those of central nervous system (CNS), in Spain. Methods: Cases were drawn from eleven Spanish population-based cancer registries. Incidence was estimated for the period 1983-2007 and trends were evaluated using Joinpoint regression analysis. Results: The studied tumour groups accounted for 36% of total childhood cancers and 47.6% of those diagnosed in adolescence with annual rates per million of 53.5 and 89.3 respectively. In children 0 to 14 years of age, Neuroblastoma (NB) was the commonest (7.8%) followed by Soft-tissue sarcomas (STS) (6.3%), bone tumours (BT) (6.2%) and renal tumours (RT) (4.5%). NB was the most frequently diagnosed tumour before the 5th birthday, while STS and BT were the commonest at 5-9 years of age, and BT and Carcinoma and other epithelial tumours (COET) at 10-14. COET presented the highest incidence in adolescents, followed by germ-cell tumours (GCT), BT and STS. These four diagnostic groups accounted for 94% of total non-CNS solid tumours, in adolescents. Overall incidence rates increased significantly in children up to 1996 with an annual percentage change (APC) of 2.6% (95%CI: 1.7; 3.6). NB and COET showed significant time trend (APCs: 1.4% and 3.8% respectively) while other tumour groups such as RT, STS, BT or GCT had no significant changes over time. A significant increase was present in NB under the age of 5 and in BT and STS in children aged 10-14 years. In adolescents there were significant increases for all tumours combined (APC=2.7; 95%CI: 1.8-3.6) and for STS, GCT and COET (APCs: 3.2%, 4.4% and 3.5% respectively), while other tumour groups such as hepatic tumours, BT or thyroid carcinomas showed a decreasing trend or no increase. Conclusions: Overall, the incidence of the studied cancers in children increased along the period 1983-1996 with no posterior significant rise, while the incidence

  5. Second generation registry framework

    OpenAIRE

    Bellgard, Matthew I.; Render, Lee; Radochonski, Maciej; Hunter, Adam

    2014-01-01

    Background Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved pat...

  6. Trauma registry reengineered.

    Science.gov (United States)

    Wargo, Christina; Bolig, Nicole; Hixson, Heather; McWilliams, Nate; Rummerfield, Heather; Stratton, Elaine; Woodruff, Tracy

    2014-01-01

    A successful trauma registry balances accuracy of abstraction and timeliness of case submissions to achieve quality performance. Staffing to achieve quality performance is a challenge at times based on competitive institutional need. The aim of this performance improvement timing study was to identify trauma registry job responsibilities and redesign the responsibilities to create increased abstraction time and maintain accuracy of data abstraction. The outcome is measured by case submission rates with existing staffing and interrater reliability outcomes. PMID:25397337

  7. Advance and stagnation in the treatment of patients with lymphoma and myeloma: Analysis using population-based cancer registry data in Japan from 1993 to 2006.

    Science.gov (United States)

    Chihara, Dai; Ito, Hidemi; Izutsu, Koji; Hattori, Masakazu; Nishino, Yoshikazu; Ioka, Akiko; Matsuda, Tomohiro; Ito, Yuri

    2015-09-01

    There have been significant advances in the treatment of patients with lymphoma and myeloma. Although the improvements in survival outcome have been clearly addressed by clinical trials, these studies includes patients who are otherwise healthy and would be eligible for trials that the actual improvement in survival in the general patient population over time is yet to be elucidated. Therefore, we reviewed the cancer-registry data of patients with lymphoma and myeloma in Japan from 1993 to 2006 and estimated relative survival (adjusted for competing causes of death in same-age members of the general population) according to three periods of diagnosis (1993-1997, 1998-2002 and 2003-2006). We also estimated conditional 5-year relative survival (5-year survival rate of patients who have survived 5 years). A total of 26,141 patients were reviewed and analyzed. Relative survival improved in Hodgkin lymphoma (HL, N = 853, +20% improvement), diffuse large B-cell lymphoma (DLBCL, N = 4,919, +14% improvement) and follicular lymphoma (FL, N = 1,333, +13% improvement). In contrast, we found no significant improvement in survival since 1993 in peripheral T-cell lymphoma (PTCL, N = 667, +4% improvement), adult T-cell leukemia/lymphoma (ATLL, N = 2,166, -5% improvement) or multiple myeloma (MM, N = 4,914, -2% improvement). Conditional 5-year survival of HL, DLBCL, FL, PTCL, ATLL and MM was 88, 87, 79, 63, 53 and 45%, respectively. Relative survival of patients with HL, DLBCL and FL significantly improved from 1993 to 2006 in Japan; in contrast, no improvement was seen in other diseases, suggesting unmet need of novel treatment strategies. PMID:25694231

  8. Germline mutations in PMS2 and MLH1 in individuals with solitary loss of PMS2 expression in colorectal carcinomas from the Colon Cancer Family Registry Cohort

    Science.gov (United States)

    Rosty, Christophe; Clendenning, Mark; Walsh, Michael D; Eriksen, Stine V; Southey, Melissa C; Winship, Ingrid M; Macrae, Finlay A; Boussioutas, Alex; Parry, Susan; Arnold, Julie; Young, Joanne P; Casey, Graham; Haile, Robert W; Gallinger, Steven; Le Marchand, Loïc; Newcomb, Polly A; Potter, John D; DeRycke, Melissa; Lindor, Noralane M; Thibodeau, Stephen N; Baron, John A; Win, Aung Ko; Hopper, John L; Jenkins, Mark A; Buchanan, Daniel D

    2016-01-01

    Objectives Immunohistochemistry for DNA mismatch repair proteins is used to screen for Lynch syndrome in individuals with colorectal carcinoma (CRC). Although solitary loss of PMS2 expression is indicative of carrying a germline mutation in PMS2, previous studies reported MLH1 mutation in some cases. We determined the prevalence of MLH1 germline mutations in a large cohort of individuals with a CRC demonstrating solitary loss of PMS2 expression. Design This cohort study included 88 individuals affected with a PMS2-deficient CRC from the Colon Cancer Family Registry Cohort. Germline PMS2 mutation analysis (long-range PCR and multiplex ligation-dependent probe amplification) was followed by MLH1 mutation testing (Sanger sequencing and multiplex ligation-dependent probe amplification). Results Of the 66 individuals with complete mutation screening, we identified a pathogenic PMS2 mutation in 49 (74%), a pathogenic MLH1 mutation in 8 (12%) and a MLH1 variant of uncertain clinical significance predicted to be damaging by in silico analysis in 3 (4%); 6 (9%) carried variants likely to have no clinical significance. Missense point mutations accounted for most alterations (83%; 9/11) in MLH1. The MLH1 c.113A> G p.Asn38Ser mutation was found in 2 related individuals. One individual who carried the MLH1 intronic mutation c.677+3A>G p.Gln197Argfs*8 leading to the skipping of exon 8, developed 2 tumours, both of which retained MLH1 expression. Conclusions A substantial proportion of CRCs with solitary loss of PMS2 expression are associated with a deleterious MLH1 germline mutation supporting the screening for MLH1 in individuals with tumours of this immunophenotype, when no PMS2 mutation has been identified. PMID:26895986

  9. Descriptive Epidemiology of Human Thyroid Cancer: Experience from a Regional Registry and the “Volcanic Factor”

    Directory of Open Access Journals (Sweden)

    PasqualinoMalandrino

    2013-06-01

    In Sicily, between 2002 and 2004, 1,950 new cases of TC were identified, with an age-standardized rate (world ASR(w=17.8/100000 in females and 3.7/100000 in males and a high female/male ratio (4.3:1.0. The incidence of TC was heterogeneous within Sicily. There were 2.3 times more cases in the Catania province (where most of the inhabitants live in the volcanic area of Mt. Etna: ASR(w=31.7/105 in females and 6.4/105 in males vs 14.1 in females and 3.0 in males in the rest of Sicily. Multivariate analysis documented that residents in the volcanic area of Mt. Etna had a higher risk of TC, compared to the residents in urban, industrial and iodine deficient areas of Sicily. An abnormally high concentration of several chemicals was found in the drinking water of the Mt. Etna aquifer, which provides water to most of the residents in the Catania province. Our data suggest that environmental carcinogen(s of volcanic origin may promote papillary TC. Additional analyses, including cancer biological and molecular features, will allow a better understanding of risk factors and etiopathogenetic mechanisms.

  10. The Qingdao Twin Registry

    DEFF Research Database (Denmark)

    Duan, Haiping; Ning, Feng; Zhang, Dongfeng; Wang, Shaojie; Zhang, Dong; Tan, Qihua; Tian, Xiaocao; Pang, Zengchang

    2013-01-01

    In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants of...... metabolic disorders and health behaviors during puberty and young adulthood. Adult twins have been sampled for studying heritability of multiple phenotypes associated with metabolic disorders. In addition, an elderly twin cohort has been recruited with a focus on genetic studies of aging-related phenotypes...... using twin modeling and genome-wide association analysis. Cross-cultural collaborative studies have been carried out between China, Denmark, Finland, and US cohorts. Ongoing data collection and analysis for the Qingdao Twin Registry will be discussed in this article....

  11. The incidence rate of corpus uteri cancer among females in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

    OpenAIRE

    Alghamdi IG; Hussain II; Alghamdi MS; El-Sheemy MA

    2014-01-01

    Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, UK; 2Ministry of Health, General Directorate of Health Affairs, Al-Baha, Kingdom of Saudi Arabia; 3Research and Development, Lincoln Hospital, Lincolnshire Hospitals NHS Trust, Lincoln, UK Background: The present study reviews the epidemiological data on corpus uteri cancer among Saudi women, including its frequency, crude incidence rate, and age-standardized inc...

  12. The incidence rate of female breast cancer in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001-2008

    OpenAIRE

    Alghamdi IG; Hussain II; Alghamdi MS; El-Sheemy MA

    2013-01-01

    Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, United Kingdom; 2Ministry of Health, General Directorate of Health Affairs Al-Baha, Kingdom of Saudi Arabia; 3Lincoln Hospital, Research and Development, United Lincolnshire Hospitals, National Health Service Trust, Lincoln, United Kingdom Background: This study presents descriptive epidemiological data related to breast cancer cases diagnosed from 2001 to 2008 a...

  13. The Danish Twin Registry

    DEFF Research Database (Denmark)

    Skytthe, Axel; Ohm Kyvik, Kirsten; Vilstrup Holm, Niels; Christensen, Kaare

    Introduction: The Danish Twin Registry is a unique source for studies of genetic, familial and environmental factors on life events, health conditions and diseases. Content: More than 85,000 twin pairs born 1870-2008 in Denmark. Validity and coverage: Four main ascertainment methods have been...... employed. Completeness of ascertainment varies according to birth cohorts. For birth cohorts 1870-1930 both twins should survive to age 6 years. From 1931-1968 72% of all twin pairs has been ascertained, with complete ascertainment of all live born twins since 1968. CONCLUSION: Because twins have been...... identified independent of traits and on a population basis, the Danish Twin Registry is well suited for studies to understand the influence of genetic and environmental factors for a wide variety of diseases and traits....

  14. Patterns of care and treatment trends for Canadian men with localized low-risk prostate cancer: an analysis of provincial cancer registry data

    Science.gov (United States)

    Tran, K.; Rahal, R.; Fung, S.; Louzado, C.; Porter, G.; Xu, J.; Bryant, H.

    2016-01-01

    Background Many prostate cancers (pcas) are indolent and, if left untreated, are unlikely to cause death or morbidity in a man’s lifetime. As a result of testing for prostate-specific antigen, more such cases are being identified, leading to concerns about “overdiagnosis” and consequent overtreatment of pca. To mitigate the risks associated with overtreatment (that is, invasive therapies that might cause harm to the patient without tangible benefit), approaches such as active surveillance are now preferred for many men with low-risk localized pca (specifically, T1/2a, prostate-specific antigen ≤ 10 ng/mL, and Gleason score ≤ 6). Here, we report on patterns of care and treatment trends for men with localized low-risk pca. Results The provinces varied substantially with respect to the types of primary treatment received by men with localized low-risk pca. From 2010 to 2013, many men had no record of surgical or radiation treatment within 1 year of diagnosis—a proxy for active surveillance; the proportion ranged from 53.3% in Nova Scotia to 80.8% in New Brunswick. Among men who did receive primary treatment, the use of radical prostatectomy ranged from 12.0% in New Brunswick to 35.9% in Nova Scotia. The use of radiation therapy (external-beam radiation therapy or brachytherapy) ranged from 4.1% in Newfoundland and Labrador to 17.6% in Alberta. Treatment trends over time suggest an increase in the use of active surveillance. The proportion of men with low-risk pca and no record of surgical or radiation treatment rose to 69.9% in 2013 from 46.1% in 2010 for all provinces combined. Conclusions The provinces varied substantially with respect to patterns of care for localized low-risk pca. Treatment trends over time suggest an increasing use of active surveillance. Those findings can further the discussion about the complex care associated with pca and identify opportunities for improvement in clinical practice. PMID:26966405

  15. National registry of myocardial infarction

    OpenAIRE

    Amin Daemi; Mehdi Jafari

    2016-01-01

    The Registry of Myocardial Infarctions (MI Registry) is a national registry in Iran that collects and reports the data on myocardial infarctions. Its main advantage is that it covers the whole country and is mandatory for hospitals to register the MI cases in it. Then, the qualified individuals at the provincial and national levels can get intended reports and make appropriate decisions. Such reports, further to the policy makers and managers, can be very valuable for researchers. The regi...

  16. Progress against non-Hodgkin lymphoma in the Netherlands: Incidence, patterns of care and prognosis since 1989 (Studies with cancer registry data)

    NARCIS (Netherlands)

    S.A.M. van de Schans (Saskia)

    2010-01-01

    textabstractCancers arising from the haematopoietic and lymphoid tissue comprise a heterogeneous group of malignancies with diverse clinical and biological features. The World Health Organization (WHO) classification of Haematopoietic and Lymphoid tissue, classified these cancers based on histologic

  17. Using a state cancer registry to recruit young breast cancer survivors and high-risk relatives: protocol of a randomized trial testing the efficacy of a targeted versus a tailored intervention to increase breast cancer screening

    OpenAIRE

    Katapodi, Maria C; Northouse, Laurel L.; Schafenacker, Ann M; Duquette, Debra; Duffy, Sonia A; Ronis, David L.; Anderson, Beth; Janz, Nancy K.; McLosky, Jennifer; Milliron, Kara J; Merajver, Sofia D; Duong, Linh M; Copeland, Glenn

    2013-01-01

    Background The Michigan Prevention Research Center, the University of Michigan Schools of Nursing, Public Health, and Medicine, and the Michigan Department of Community Health propose a multidisciplinary academic-clinical practice three-year project to increase breast cancer screening among young breast cancer survivors and their cancer-free female relatives at greatest risk for breast cancer. Methods/design The study has three specific aims: 1) Identify and survey 3,000 young breast cancer s...

  18. Worldwide variability in deceased organ donation registries

    OpenAIRE

    Rosenblum, Amanda M.; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X

    2012-01-01

    The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of regis...

  19. The Danish Twin Registry

    DEFF Research Database (Denmark)

    Skytthe, Axel; Christiansen, Lene; Kyvik, Kirsten Ohm; Bødker, Frans L; Hvidberg, Lars; Petersen, Inge; Nielsen, Morten M F; Bingley, Paul; Hjelmborg, Jacob; Tan, Qihua; Holm, Niels V; Vaupel, James W; McGue, Matt; Christensen, Kaare

    2013-01-01

    Over the last 60 years, the resources and the research in the Danish Twin Registry (DTR) have periodically been summarized. Here, we give a short overview of the DTR and a more comprehensive description of new developments in the twenty-first century. First, we outline our experience over the last...... decade of combining questionnaire and survey data with national demographic, social, and health registers in Statistics Denmark. Second, we describe our most recent data collection effort, which was conducted during the period 2008-2011 and included both in-person assessments of 14,000+ twins born 1931......-1969 and sampling of biological material, hereby expanding and consolidating the DTR biobank. Third, two examples of intensively studied twin cohorts are given. The new developments in the DTR in the last decade have facilitated the ongoing research and laid the groundwork for new research directions....

  20. Utility of an Australasian registry for children undergoing radiation treatment

    International Nuclear Information System (INIS)

    The aim of this study was to evaluate the utility of an Australasian registry ('the Registry') for children undergoing radiation treatment (RT). Children under the age of 16years who received a course of radiation between January 1997 and December 2010 and were enrolled on the Registry form the subjects of this study. A total of 2232 courses of RT were delivered, predominantly with radical intent (87%). Registrations fluctuated over time, but around one-half of children diagnosed with cancer undergo a course of RT. The most prevalent age range at time of RT was 10–15years, and the most common diagnoses were central nervous system tumours (34%) and acute lymphoblastic leukaemia (20%). The Registry provides a reflection of the patterns of care of children undergoing RT in Australia and a mechanism for determining the resources necessary to manage children by RT (human, facilities and emerging technologies, such as proton therapy). It lacks the detail to provide information on radiotherapy quality and disease outcomes which should be the subject of separate audit studies. The utility of the Registry has been hampered by its voluntary nature and varying needs for consent. Completion of registry forms is a logical requirement for inclusion in the definition of a subspecialist in paediatric radiation oncology.

  1. Retinoblastoma Registry report--Hospital Kuala Lumpur experience.

    Science.gov (United States)

    Jamalia, R; Sunder, R; Alagaratnam, J; Goh, P P

    2010-06-01

    Retinoblastoma is a childhood ocular cancer. The aim of this paper is to describe the clinical and epidemiological characteristics of patients with retinoblastoma in a major paediatric ophthalmology center in the country. Retrospective information was collected through the retinoblastoma registry. Late presentation with advanced staging is a major problem. PMID:21488473

  2. Tools and data services registry

    DEFF Research Database (Denmark)

    Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé;

    2016-01-01

    Life sciences are yielding huge data sets that underpin scientific discoveries fundamental to improvement in human health, agriculture and the environment. In support of these discoveries, a plethora of databases and tools are deployed, in technically complex and diverse implementations, across...... at hand.Here we present a community-driven curation effort, supported by ELIXIR-the European infrastructure for biological information-that aspires to a comprehensive and consistent registry of information about bioinformatics resources. The sustainable upkeep of this Tools and Data Services Registry......, the registry can become a standard for dissemination of information about bioinformatics resources: we welcome everyone to join us in this common endeavour. The registry is freely available at https://bio.tools....

  3. The potential value of sibling controls compared with population controls for association studies of lifestyle-related risk factors: an example from the Breast Cancer Family Registry

    OpenAIRE

    Milne, Roger L.; John, Esther M.; Julia A. Knight; Dite, Gillian S; Southey, Melissa C; Giles, Graham G.; Apicella, Carmel; West, Dee W.; Andrulis, Irene L; Whittemore, Alice S; Hopper, John L

    2011-01-01

    Background A previous Australian population-based breast cancer case-control study found indirect evidence that control participation, although high, was not random. We hypothesized that unaffected sisters may provide a more appropriate comparison group than unrelated population controls.

  4. Do female cancer patients display better survival rates compared with males? Analysis of the Korean National Registry data, 2005-2009.

    Directory of Open Access Journals (Sweden)

    Kyu-Won Jung

    Full Text Available BACKGROUND: Sex differences have been reported in the prognosis of certain cancers. In this study, we investigated whether Korean females display better survival rates compared with male patients for solid tumor sites. METHODS: We analyzed data from the Korean National Cancer Incidence Database from 599,288 adult patients diagnosed with solid cancers between 2005 and 2009. Patients were followed until December 2010. We applied a relative excess risk (RER model adjusting for year of follow-up, age at diagnosis, and stage at diagnosis. RESULTS: For all solid cancer sites combined, women displayed an 11% lower risk of death compared to men (RER 0.89; 95% CI 0.88-0.90 after adjusting for year of follow-up, age, stage, and case mix. Women showed significantly lower RERs for the following sites: head/neck, esophagus, small intestine, liver, nasal cavities, lung, bone/cartilages, melanoma of skin, soft tissue, brain and CNS, and thyroid. In contrast, women displayed a poorer prognosis than did men for colorectal, laryngeal, kidney and bladder cancer. However, the survival gaps between men and women narrowed by increase in age; female patients over 75 years of age displayed a 3% higher RER of death compared with males in this age group. CONCLUSIONS: Female cancer patients display an improved survival for the majority of solid tumor sites, even after adjustment for age and stage. Age at diagnosis was the major contributor to the women's survival advantage.

  5. The SystHERs registry: an observational cohort study of treatment patterns and outcomes in patients with human epidermal growth factor receptor 2–positive metastatic breast cancer

    International Nuclear Information System (INIS)

    Amplification of the human epidermal growth factor receptor 2 (HER2) gene occurs in approximately 20% of invasive breast cancer cases and is associated with a more aggressive disease course than HER2-negative breast cancer. HER2-targeted therapies have altered the natural history of HER2-positive breast cancer, a trend that will likely further improve with the recent approval of new agents. A prospective, observational cohort study was designed and initiated to provide real-world insights into current treatment patterns, long-term survival, and patients’ experiences with initial and subsequent treatments for HER2-positive metastatic breast cancer (MBC). The Systematic Therapies for HER2-positive Metastatic Breast Cancer Study (SystHERs) is a US-based prospective observational cohort study enrolling patients ≥18 years of age with recently diagnosed HER2-positive MBC not previously treated with systemic therapy in the metastatic setting. The primary objective of the study is to identify treatment patterns and clinical outcomes in recently diagnosed patients in a variety of practice settings. Secondary objectives include comparative efficacy, safety, and patient-reported outcomes (PROs). Healthcare resource utilization is an exploratory end point. Tumor tissue and blood sample collection is optional. The SystHERs registry will enroll approximately 1000 patients over a 3-year period, after which the study will continue for ≥5 years, allowing for a maximum follow-up of 8 years. The treating physician will determine all care and the frequency of visits. PRO measures will be completed at study enrollment and every 90 days. Clinical data will be abstracted quarterly from patient records. The first patient was enrolled in June 2012, and preliminary descriptive data based on 25% to 30% of the final study population are expected at the end of 2013, and as of April 25, 2014, 386 patients are enrolled. SystHERs is expected to provide in-depth data on demographic

  6. Low subjective health literacy is associated with adverse health behaviors and worse health-related quality of life among colorectal cancer survivors: results from the profiles registry

    NARCIS (Netherlands)

    Husson, O.; Mols, F.; Fransen, M.P.; Poll-Franse, L.V. van de; Ezendam, N.P.

    2015-01-01

    BACKGROUND: The objectives of the study were to examine the prevalence of health literacy (HL) among colorectal cancer (CRC) survivors and the relation between HL and health behaviors and to explore whether or not HL and health behaviors are independently associated with health-related quality of li

  7. Worldwide variability in deceased organ donation registries.

    Science.gov (United States)

    Rosenblum, Amanda M; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X

    2012-08-01

    The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use. PMID:22507140

  8. Environmental Agents Service (EAS) Registry System of Records

    Data.gov (United States)

    Department of Veterans Affairs — The Environmental Agent Service (EAS) Registries is the information system encompassing the Ionizing Radiation Registry (IRR), the Agent Orange Registry (AOR), and...

  9. Characterizing inflammatory breast cancer among Arab Americans in the California, Detroit and New Jersey Surveillance, Epidemiology and End Results (SEER) registries (1988–2008)

    OpenAIRE

    Hirko, Kelly A.; Soliman, Amr S; Banerjee, Mousumi; Ruterbusch, Julie; Harford, Joe B; Chamberlain, Robert M.; Graff, John J.; Merajver, Sofia D; Schwartz, Kendra

    2013-01-01

    Introduction Inflammatory breast cancer (IBC) is characterized by an apparent geographical distribution in incidence, being more common in North Africa than other parts of the world. Despite the rapid growth of immigrants to the United States from Arab nations, little is known about disease patterns among Arab Americans because a racial category is rarely considered for this group. The aim of this study was to advance our understanding of the burden of IBC in Arab ethnic populations by descri...

  10. Increased incidence of myelodysplastic syndrome and acute myeloid leukemia following breast cancer treatment with radiation alone or combined with chemotherapy: a registry cohort analysis 1990-2005

    International Nuclear Information System (INIS)

    Our objective was to measure myelodysplastic syndrome (MDS) and acute myelogenous leukemia (AML) risk associated with radiation and/or chemotherapy breast cancer (BC) treatment. Our study cohort was composed of BC patients diagnosed from 1990 to 2005 and followed up for blood disorders, mean length of follow up = 7.17 years, range 2-18 years. 5790 TNM stage 0-III patients treated with surgery alone, radiation and/or chemotherapy were included. Patients without surgery (n = 111), with stem cell transplantation (n = 98), unknown or non-standard chemotherapy regimens (n = 94), lost to follow up (n = 66) or 'cancer status unknown' (n = 67) were excluded. Rates observed at our community based cancer care institution were compared to SEER incidence data for rate ratio (RR) calculations. 17 cases of MDS/AML (10 MDS/7 AML) occurred during the follow up period, crude rate .29% (95% CI = .17, .47), SEER comparison RR = 3.94 (95% CI = 2.34, 6.15). The RR of MDS in patients age < 65 comparing our cohort incidence to SEER incidence data was 10.88 (95% CI = 3.84, 24.03) and the RR of AML in patients age < 65 was 5.32 (95% CI = 1.31, 14.04). No significant increased risk of MDS or AML was observed in women ≥ 65 or the surgery/chemotherapy-only group. A RR of 3.32 (95% CI = 1.42, 6.45) was observed in the surgery/radiation-only group and a RR of 6.32 (95% CI = 3.03, 11.45) in the surgery/radiation/chemotherapy group. 3 out of 10 MDS cases died of disease at an average 3.8 months post diagnosis and five of seven AML cases died at an average 9 months post diagnosis. An elevated rate of MDS and AML was observed among breast cancer patients < 65, those treated with radiation and those treated with radiation and chemotherapy compared to available population incidence data. Although a small number of patients are affected, leukemia risk associated with treatment and younger age is significant

  11. The Danish National Prescription Registry

    DEFF Research Database (Denmark)

    Kildemoes, Helle Wallach; Toft Sørensen, Henrik; Hallas, Jesper

    Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR), co...

  12. The Danish Shoulder Arthroplasty Registry

    DEFF Research Database (Denmark)

    Rasmussen, Jeppe; Jakobsen, John; Brorson, Stig;

    2012-01-01

    The Danish Shoulder Arthroplasty Registry (DSR) was established in 2004. Data are reported electronically by the surgeons. Patient-reported outcome is collected 10-14 months postoperatively using the Western Ontario osteoarthritis of the shoulder index (WOOS). 2,137 primary shoulder arthroplasties...

  13. 27 CFR 24.115 - Registry number.

    Science.gov (United States)

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 false Registry number. 24.115... OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded...

  14. On the Cooperation of Independent Registries

    CERN Document Server

    Miraz, Matteo

    2010-01-01

    Registries play a key role in service-oriented applications. Originally, they were neutral players between service providers and clients. The UDDI Business Registry (UBR) was meant to foster these concepts and provide a common reference for companies interested in Web services. The more Web services were used, the more companies started create their own local registries: more efficient discovery processes, better control over the quality of published information, and also more sophisticated publication policies motivated the creation of private repositories. The number and heterogeneity of the different registries - besides the decision to close the UBR are pushing for new and sophisticated means to make different registries cooperate. This paper proposes DIRE (DIstributed REgistry), a novel approach based on a publish and subscribe (P/S) infrastructure to federate different heterogeneous registries and make them exchange information about published services. The paper discusses the main motivations for the P...

  15. CIRSE Vascular Closure Device Registry

    International Nuclear Information System (INIS)

    Purpose: Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods: The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results: Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0–14.5] for antegrade access and 1.8% (95% CI 1.1–2.9) for retrograde access (P = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only 5.9 cm, and two vessel occlusions. Conclusion: The conclusion of this registry of closure devices with an anchor and a plug is that the use of this device in interventional radiology procedures is safe, with a low incidence of serious access site complications. There seems to be no difference in complications between antegrade and retrograde access and other parameters.

  16. The Twin Research Registry at SRI International.

    Science.gov (United States)

    Krasnow, Ruth E; Jack, Lisa M; Lessov-Schlaggar, Christina N; Bergen, Andrew W; Swan, Gary E

    2013-02-01

    The Twin Research Registry (TRR) at SRI International is a community-based registry of twins established in 1995 by advertising in local media, mainly on radio stations and in newspapers. As of August 2012, there are 3,120 same- and opposite-sex twins enrolled; 86% are 18 years of age or older (mean age 44.9 years, SD 16.9 years) and 14% less than 18 years of age (mean age 8.9 years, SD 4.5); 67% are female, and 62% are self-reported monozygotic (MZ). More than 1,375 twins have participated in studies over the last 15 years in collaboration with the University of California Medical Center in San Francisco, the University of Texas MD Anderson Cancer Center, and the Stanford University School of Medicine. Each twin completes a registration form with basic demographic information either online at the TRR Web site or during a telephone interview. Contact is maintained with members by means of annual newsletters and birthday cards. The managers of the TRR protect the confidentiality of twin data with established policies; no information is given to other researchers without prior permission from the twins; and all methods and procedures are reviewed by an Institutional Review Board. Phenotypes studied thus far include those related to nicotine metabolism, mutagen sensitivity, pain response before and after administration of an opioid, and a variety of immunological responses to environmental exposures, including second-hand smoke and vaccination for seasonal influenza virus and Varicella zoster virus. Twins in the TRR have participated in studies of complex, clinically relevant phenotypes that would not be feasible to measure in larger samples. PMID:23084148

  17. Un método para determinar la calidad de la información del registro del cáncer A method for ascertaining the quality of cancer registry data

    Directory of Open Access Journals (Sweden)

    Arduino Verdecchia

    2004-06-01

    if, mortality, incidence and patients’ survival data are high quality and complete. The MIAMOD method was developed to provide incidence, prevalence and mortality estimates and projections, using mortality and patients’ survival information at national or regional levels. Examples of application of the MIAMOD method to national cancer registries in Europe are given to show the performance of the method in checking the CR data for internal consistency and completeness of registration. We are proposing the MIAMOD method and software as a tool for CR useful to check for completeness and quality of their data and to provide future cancer burden information for health planning and allocation of resources for their area

  18. Estimating the completeness of German cancer registries

    OpenAIRE

    Haberland, Jörg; Schön, D.; Bertz, Joachim; Görsch, B

    2003-01-01

    Das 1995 in Deutschland in Kraft getretene Bundeskrebsregistergesetz verpflichtete alle Bundesländer, epidemiologische Krebsregister einzurichten. Dieses inzwischen schon wieder ausgelaufene Gesetz hat die Krebsregistrierung in den Bundesländern stark vorangetrieben und zur Etablierung zahlreicher epidemiologischer Register geführt. Insbesondere für die sich im Aufbau befindlichen Krebsregister ist es wichtig, Vollzähligkeitsschätzungen durchzuführen, da ein Register nur mit einem ausreichend...

  19. Private provider participation in statewide immunization registries

    Directory of Open Access Journals (Sweden)

    Cowan Anne E

    2006-02-01

    Full Text Available Abstract Background Population-based registries have been promoted as an effective method to improve childhood immunization rates, yet rates of registry participation in the private sector are low. We sought to describe, through a national overview, the perspectives of childhood immunization providers in private practice regarding factors associated with participation or non-participation in immunization registries. Methods Two mailed surveys, one for 264 private practices identified as registry non-participants and the other for 971 identified as registry participants, from 15 of the 31 states with population-based statewide immunization registries. Frequency distributions were calculated separately for non-participants and participants regarding the physician-reported factors that influenced decisions related to registry participation. Pearson chi-square tests of independence were used to assess associations among categorical variables. Results Overall response rate was 62% (N = 756. Among non-participants, easy access to records of vaccines provided at other sites (N = 101, 68% and printable immunization records (N = 82, 55% were most often cited as "very important" potential benefits of a registry, while the most commonly cited barriers to participation were too much cost/staff time (N = 36, 38% and that the practice has its own system for recording and monitoring immunizations (N = 35, 37%. Among registry participants, most reported using the registry to input data on vaccines administered (N = 326, 87% and to review immunization records of individual patients (N = 302, 81%. A minority reported using it to assess their practice's immunization coverage (N = 110, 29% or generate reminder/recall notices (N = 54, 14%. Few participants reported experiencing "significant" problems with the registry; the most often cited was cost/staff time to use the registry (N = 71, 20%. Conclusion Most registry participants report active participation with few

  20. Malignancies in Swedish persons with haemophilia: a longitudinal registry study.

    Science.gov (United States)

    Lövdahl, Susanna; Henriksson, Karin M; Baghaei, Fariba; Holmström, Margareta; Berntorp, Erik; Astermark, Jan

    2016-09-01

    The aim of the study was to investigate, over time, the incidence of and mortality due to malignant diseases among persons with haemophilia, compared to matched controls. Persons with haemophilia A or B were enrolled via registries at each haemophilia centre, as well as from the National Patient Registry, and were compared to five sex and age-matched controls per patient. Data from the national Cancer Registry were linked to the study participants. A total of 1431 persons with haemophilia and 7150 matched controls were enrolled. Between the years 1972 and 2008, 164 malignancies were reported. The most common type of cancer among patients was prostate cancer, followed by haematologic malignancies, including lymphoma and leukaemia, which were significantly more frequent in patients [n = 35 (2.4%) vs. n = 60 (0.8%); P < 0.001]. Malignancies in bladder and other urinary organs were also significantly different [n = 21 (1.5%) vs. n = 46 (0.6%); P < 0.01]. The overall incidence rate ratio of malignancies per 1000 person-years compared to the controls was 1.3 [95% confidence interval (CI) 1.1, 1.6]. In subgroup analysis, the corresponding incidence rate ratios per 1000 person-years for persons with severe haemophilia was 1.7 (95% CI 0.9, 3.1) and that for mild/moderate haemophilia 1.1 (95% CI 0.8, 1.5). Swedish persons with haemophilia had a significantly higher incidence of malignant diseases than controls. These were primarily haematologic malignancies and cancer in urinary organs, and the difference independent of any co-infections with HIV and/or viral hepatitis. The findings indicate the importance of further studies and close follow-up of malignancies in persons with haemophilia. PMID:26974329

  1. Windows registry forensics advanced digital forensic analysis of the Windows registry

    CERN Document Server

    Carvey, Harlan

    2011-01-01

    Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.

  2. Correcting for catchment area nonresidency in studies based on tumor-registry data

    International Nuclear Information System (INIS)

    We discuss the effect of catchment area nonresidency on estimates of cancer incidence from a tumor-registry-based cohort study and demonstrate that a relatively simple correction is possible in the context of Poisson regression analysis if individual residency histories or the probabilities of residency are known. A comparison of a complete data maximum likelihood analysis with several Poisson regression analyses demonstrates the adequacy of the simple correction in a large simulated data set. We compare analyses of stomach-cancer incidence from the Radiation Effects Research Foundation tumor registry with and without the correction. We also discuss some implications of including cases identified only on the basis of death certificates. (author)

  3. Service registry design: an information service approach

    NARCIS (Netherlands)

    Ferreira Pires, Luis; Oostrum, van Arjen; Wijnhoven, Fons; Wang, J.

    2010-01-01

    A service registry is a Service-Oriented Architecture (SOA) component that keeps a ‘catalogue’ of available services. It stores service specifications so that these specifications can be found by potential users. Discussions on the design of service registries currently focus on technical issues, wh

  4. 50 CFR 600.1410 - Registry process.

    Science.gov (United States)

    2010-10-01

    ... 50 Wildlife and Fisheries 8 2010-10-01 2010-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  5. The Western Denmark Cardiac Computed Tomography Registry

    DEFF Research Database (Denmark)

    Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans Henrik;

    2015-01-01

    BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...

  6. Southern Saskatchewan Ticagrelor Registry experience

    Directory of Open Access Journals (Sweden)

    Dehghani P

    2014-10-01

    Full Text Available Payam Dehghani,1 Varun Chopra,1 Ali Bell,2 Sheila Kelly,1 Lori Zulyniak,2 Jeff Booker,1 Rodney Zimmermann,1 William Semchuk,2 Asim N Cheema,3 Andrea J Lavoie1 1Prairie Vascular Research Network, University of Saskatchewan, Regina, SK, 2Regina Qu’Appelle Health Region, Regina, SK, 3St Michael’s Hospital, University of Toronto, Toronto, ON, Canada Background: As ticagrelor enters into clinical use for acute coronary syndrome, it is ­important to understand patient/physician behavior in terms of appropriate use, adherence, and event rates. Methods: The Saskatchewan Registry is a prospective, observational, multicenter cohort study that identifies consecutive patients started on ticagrelor. We aimed to evaluate both on- and off-label use, identify characteristics of patients who prematurely stop ticagrelor, and describe patient/physician behavior contributing to inappropriate stoppage of this medication. Results: From April 2012 to September 2013, 227 patients were initiated on ticagrelor, with a mean age of 62.2±12.1 years. The participants were 66% men and had a mean follow up of 157.4±111.7 days. Seventy-four patients (32.4% had off-label indications. Forty-seven patients (20.7% prematurely stopped ticagrelor and were more likely to be older, women, nonwhite, present with shock, and complain of dyspnea. Twenty-six of the 47 patients stopped ticagrelor inappropriately because of patient nonadherence (18 patients and physician advice (eight patients. A composite outcome event of death from vascular causes, myocardial infarction, or stroke occurred in 8.8% of the entire cohort and was more likely to occur in those older then 65 years, those presenting with cardiogenic shock, and those who prematurely stopped ticagrelor. Conclusion: In this real-world registry of patients started on ticagrelor, a third have off-label indications and a fifth prematurely stop the medication. Premature discontinuation was an independent predictor of major

  7. Choropleth Map Design for Cancer Incidence, Part 1

    OpenAIRE

    Thomas B. Richards, MD; Zahava Berkowitz, MSPH; Cheryll C. Thomas, MSPH; Stephanie Lee Foster, MPH; Annette Gardner; Jessica Blythe King, MPH; Karen Ledford, CTR; Janet Royalty, MS

    2009-01-01

    Choropleth maps are commonly used in cancer reports and community discussions about cancer rates. Cancer registries increasingly use geographic information system techniques. The Centers for Disease Control and Prevention’s Division of Cancer Prevention and Control convened a Map Work Group to help guide application of geographic information systems mapping techniques and to promote choropleth mapping of data from central cancer registries supported by the National Program of Cancer Registrie...

  8. Breast Cancer in Systemic Lupus Erythematosus

    DEFF Research Database (Denmark)

    Tessier Cloutier, B; Clarke, A E; Ramsey-Goldman, R;

    2013-01-01

    Evidence points to a decreased breast cancer risk in systemic lupus erythematosus (SLE). We analyzed data from a large multisite SLE cohort, linked to cancer registries.......Evidence points to a decreased breast cancer risk in systemic lupus erythematosus (SLE). We analyzed data from a large multisite SLE cohort, linked to cancer registries....

  9. Colorectal cancer registration: the central importance of pathology

    OpenAIRE

    Manser, M; Levine, D.; Pheby, D.; Pitcher, R

    2000-01-01

    Background—Changes in cancer care have increased the importance of cancer registries in monitoring trends and outcomes. Registries are increasingly using computerised systems, such as patient administration and histopathology, as data sources. Omissions by registries can cause interpretation errors, but use of multiple data sources can overcome this.

  10. Cancer incidence in Rabat, Morocco: 2006–2008

    OpenAIRE

    Tazi, Mohammed Adnane; Er-Raki, Abdelouahed; Benjaafar, Noureddine

    2013-01-01

    Introduction No population-based data of cancer incidence from Morocco have been published before. This is the first report of cancer incidence in Rabat from a population-based cancer registry for the period 2006–2008. Materials and methods The cancer registry collects data on all new cases of cancer diagnosed in the resident population of the Rabat area. Data collection is an active process involving visits by registry staff to all data sources, essentially hospitals, pathological laboratori...

  11. EPA Facility Registry Service (FRS): SDWIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  12. EPA Facility Registry Service (FRS): RADINFO

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  13. EPA Facility Registry Service (FRS): BIA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  14. EPA Facility Registry Service (FRS): OIL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Oil...

  15. EPA Facility Registry Service (FRS): RBLC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  16. Substance Identification Information from EPA's Substance Registry

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Substance Registry Services (SRS) is the authoritative resource for basic information about substances of interest to the U.S. EPA and its state and tribal...

  17. EPA Facility Registry Service (FRS): RMP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  18. EPA Facility Registry Service (FRS): RCRA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...

  19. EPA Facility Registry Service (FRS): ACRES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of sites that link...

  20. EPA Facility Registry Service (FRS): LANDFILL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of non-hazardous waste...

  1. EPA Facility Registry Service (FRS): TRI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  2. EPA Facility Registry System (FRS): NEPT

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  3. EPA Facility Registry Service (FRS): NCDB

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  4. EPA Facility Registry Service (FRS): ICIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  5. EPA Facility Registry Service (FRS): BRAC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  6. EPA Facility Registry Service (FRS): NEI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  7. EPA Facility Registry Service (FRS): CAMDBS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  8. [Taxonomy and definition of clinical registries].

    Science.gov (United States)

    Costa, Giuseppe

    2015-09-01

    In order to assess the needs of knowledge about surveillance and registries in Italy and to prepare a proposal for the advancement of monitoring and recording capacity, a working group led by the Italian Association of Epidemiology and composed by the University of Turin, the Institute of Health and Agenas, carried out a survey of definitions and approaches used in public health and consulted the main Italian experts in surveillance and registries. Some of the reflections developed in this project are presented, to assess to which extent they are adaptable to the prospects the program PRIER aims to. Different aspects of the issue are analyzed: from the frame work necessary to identify information needs and how to improve the ability to measure and types of definitions and taxonomies of the registers, to the implications of the choices about what to include in registries on regulation of the instruments and investment priorities for new registries and surveillance. PMID:26418503

  9. EPA Facility Registry System (FRS): NCES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  10. Temporal Analysis of Windows MRU Registry Keys

    Science.gov (United States)

    Zhu, Yuandong; Gladyshev, Pavel; James, Joshua

    The Microsoft Windows registry is an important resource in digital forensic investigations. It contains information about operating system configuration, installed software and user activity. Several researchers have focused on the forensic analysis of the Windows registry, but a robust method for associating past events with registry data values extracted from Windows restore points is not yet available. This paper proposes a novel algorithm for analyzing the most recently used (MRU) keys found in consecutive snapshots of the Windows registry. The algorithm compares two snapshots of the same MRU key and identifies data values within the key that have been updated in the period between the two snapshots. User activities associated with the newly updated data values can be assumed to have occurred during the period between the two snapshots.

  11. The United States Transuranium and Uranium Registries

    International Nuclear Information System (INIS)

    The United States Transuranium and Uranium Registries are unique parallel research programs devoted to the study of the actinide elements in man. The primary mission of the Registries is to verify and ensure the adequacy and applicability of radiation protection standards for the actinides. To accomplish this task, the Registries utilize tissues obtained postmortem from informed volunteer donors with confirmed or high likelihood of exposure to plutonium, americium, or other actinides. These are collected at autopsy and radiochemically analyzed for actinide content. The results, along with relevant details of occupational and exposure history, medical history and health physics data are used to determine the distribution, biokinetics and dosimetry of the actinides in humans, and to correlate estimates of deposition and dose made during life with postmortem findings. Other important applications of the Registries' research is scaling of animal studies to man and validation or refinement of biokinetic models on which the safety standards are based

  12. Patient registries for substance use disorders

    Directory of Open Access Journals (Sweden)

    Tai B

    2014-07-01

    Full Text Available Betty Tai,1 Lian Hu,2 Udi E Ghitza,1 Steven Sparenborg,1 Paul VanVeldhuisen,2 Robert Lindblad2 1Center for the Clinical Trials Network, National Institute on Drug Abuse, National Institutes of Health, Bethesda, MD, USA; 2The EMMES Corporation, Rockville, MD, USA Abstract: This commentary discusses the need for developing patient registries of substance use disorders (SUD in general medical settings. A patient registry is a tool that documents the natural history of target diseases. Clinicians and researchers use registries to monitor patient comorbidities, care procedures and processes, and treatment effectiveness for the purpose of improving care quality. Enactments of the Affordable Care Act 2010 and the Mental Health Parity and Addiction Equity Act 2008 open opportunities for many substance users to receive treatment services in general medical settings. An increased number of patients with a wide spectrum of SUD will initially receive services with a chronic disease management approach in primary care. The establishment of computer-based SUD patient registries can be assisted by wide adoption of electronic health record systems. The linkage of SUD patient registries with electronic health record systems can facilitate the advancement of SUD treatment research efforts and improve patient care. Keywords: substance use disorders, primary care, registry, electronic health records, chronic care model

  13. Database and Registry Research in Orthopaedic Surgery: Part 2: Clinical Registry Data.

    Science.gov (United States)

    Pugely, Andrew J; Martin, Christopher T; Harwood, Jared; Ong, Kevin L; Bozic, Kevin J; Callaghan, John J

    2015-11-01

    The use of large-scale national databases for observational research in orthopaedic surgery has grown substantially in the last decade, and the data sets can be categorized as either administrative claims or clinical registries. Clinical registries contain secondary data on patients with a specific diagnosis or procedure. The data are typically used for patient outcome surveillance to improve patient safety and health-care quality. Registries used in orthopaedic research exist at the regional, national, and international levels, and many were designed to specifically collect outcomes relevant to orthopaedics, such as short-term surgical complications, longer-term outcomes (implant survival or reoperations), and patient-reported outcomes. Although heterogeneous, clinical registries-in contrast to claims data-typically have a more robust list of variables, with relatively precise prospective data input, management infrastructure, and reporting systems. Some weaknesses of clinical registries include a smaller number of patients, inconstant follow-up duration, and use of sampling methods that may limit generalizability. Within the U.S., national joint registry adoption has lagged international joint registries. Given the changing health-care environment, it is likely that clinical registries will provide valuable information that has the potential to influence clinical practice improvement and health-care policy in the future. PMID:26537168

  14. Essential Hypotension and Adaptability Registry

    Science.gov (United States)

    2016-05-30

    Blood Pressure; Depression; Panic Attack; Fibromyalgia; POTS; Inappropriate Sinus Tachycardia; Coronary Heart Disease; Acute Coronary Syndrome (ACS); Acute Myocardial Infarction (AMI); Cerebrovascular Disease (CVD); Transient Ischemic Attack (TIA); Atrial Fibrillation; Diabetes Mellitus; Cancer; Systolic Heart Failure; Diastolic Heart Failure; Chronic Fatigue Syndrome; Syncope; Vasovagal Syncope

  15. The National Mental Health Registry (NMHR).

    Science.gov (United States)

    Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y

    2008-09-01

    The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports. PMID:19227671

  16. The Danish Cerebral Palsy Registry. A registry on a specific impairment

    DEFF Research Database (Denmark)

    Uldall, P; Michelsen, Susan Ishøy; Topp, M;

    2001-01-01

    Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with CP...... are collected from paediatric departments and one special institution for disabled children. The children are included by a child neurologist and an obstetrician, and information on pregnancy, birth, neonatal period, impairments and demographic data on the child and mother are registered in a standard...... registries in Denmark will allow the social consequences of CP to be described....

  17. Findings from the Peutz-Jeghers syndrome registry of Uruguay

    KAUST Repository

    Tchekmedyian, Asadur

    2013-11-19

    Background: Peutz-Jeghers syndrome (PJS) is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. Methods: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. Results and discussion: 25 cases in 11 unrelated families were registered (15 males, 10 females). The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. Conclusion: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation. © 2013 Tchekmedyian et al.

  18. Findings from the Peutz-Jeghers syndrome registry of uruguay.

    Directory of Open Access Journals (Sweden)

    Asadur Tchekmedyian

    Full Text Available BACKGROUND: Peutz-Jeghers syndrome (PJS is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. METHODS: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. RESULTS AND DISCUSSION: 25 cases in 11 unrelated families were registered (15 males, 10 females. The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. CONCLUSION: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation.

  19. The Savant Syndrome Registry: A Preliminary Report.

    Science.gov (United States)

    Treffert, Darold A; Rebedew, David L

    2015-08-01

    A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills. PMID:26436185

  20. [The Austrian Stroke-Unit-Registry].

    Science.gov (United States)

    Hofer, Christine; Kiechl, Stefan; Lang, Wilfried

    2008-01-01

    Since 2003 the Austrian Stroke-Unit-Registry has been administered by the Gesundheit Osterreich GmbH. A total of 26 out of the 32 existing Stroke Units in Austria take part in the project, financed by the Federal Ministry of Health and accompanied by a steering group. This paper provides a description of the objectives, organisation, methodology and the data set of the registry. The main objective of the registry is quality assurance and quality improvement of stroke-treatment in stroke units. Therefore, the participating stroke units document their cases using a web-based database. The data are discussed in the steering group and the stroke units get feedback in terms of benchmarking-graphs. The data set follows a modular approach and contains information about stroke, transport, admission to the hospital, stroke unit discharge and the 3-month follow-up. Between 2003 and 2007 about 27,000 cases (containing about 20,000 strokes) were documented in the registry. PMID:18766309

  1. An active registry for bioinformatics web services.

    NARCIS (Netherlands)

    Pettifer, S.; Thorne, D.; McDermott, P.; Attwood, T.; Baran, J.; Bryne, J.C.; Hupponen, T.; Mowbray, D.; Vriend, G.

    2009-01-01

    SUMMARY: The EMBRACE Registry is a web portal that collects and monitors web services according to test scripts provided by the their administrators. Users are able to search for, rank and annotate services, enabling them to select the most appropriate working service for inclusion in their bioinfor

  2. International Clinical Trials Registry Platform (ICTRP)

    Institute of Scientific and Technical Information of China (English)

    2011-01-01

    @@ Introduction The mission of the WHO Intemational Clinical Trials Registry Platform is to ensure that a complete view of research is accessible to all those involved in health care decision making.This will improve research transparency and will ultimately strengthen tha validity and value of the scientific evidence base.The registration of all interventional trials is a scientific, ethical and moral responsibility.

  3. A review of national shoulder and elbow joint replacement registries

    DEFF Research Database (Denmark)

    Rasmussen, Jeppe V; Olsen, Bo S; Fevang, Bjørg-Tilde S; Furnes, Ove; Skytta, Eerik T; Rahme, Hans; Salomonsson, Björn; Mohammed, Khalid D; Page, Richard S; Carr, Andrew J

    2012-01-01

    The aim was to review the funding, organization, data handling, outcome measurements, and findings from existing national shoulder and elbow joint replacement registries; to consider the possibility of pooling data between registries; and to consider wether a pan european registry might be feasible....

  4. 20 CFR 655.144 - Electronic job registry.

    Science.gov (United States)

    2010-04-01

    ... order posted on the Electronic Job Registry until the end of 50 percent of the contract period as set... 20 Employees' Benefits 3 2010-04-01 2010-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job...

  5. The Danish Multiple Sclerosis Registry. History, data collection and validity

    DEFF Research Database (Denmark)

    Koch-Henriksen, N; Rasmussen, S; Stenager, E;

    2001-01-01

    The Danish Multiple Sclerosis Registry was formally established in 1956 but started operating in 1949 with a nationwide prevalence survey. Since then, the Registry has continued collecting data on new and old cases of multiple sclerosis (MS) or suspected MS from multiple sources. The Registry...

  6. 37 CFR 201.25 - Visual Arts Registry.

    Science.gov (United States)

    2010-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists...

  7. Towards a national trauma registry for the United Arab Emirates

    Directory of Open Access Journals (Sweden)

    Barka Ezedin

    2010-07-01

    Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.

  8. Ascertaining invasive breast cancer cases; the validity of administrative and self-reported data sources in Australia

    OpenAIRE

    Kemp, Anna; Preen, David B; Saunders, Christobel; Holman, C. D’Arcy J.; Bulsara, Max; Rogers, Kris; Roughead, Elizabeth E.

    2013-01-01

    Background Statutory State-based cancer registries are considered the ‘gold standard’ for researchers identifying cancer cases in Australia, but research using self-report or administrative health datasets (e.g. hospital records) may not have linkage to a Cancer Registry and need to identify cases. This study investigated the validity of administrative and self-reported data compared with records in a State-wide Cancer Registry in identifying invasive breast cancer cases. Methods Cases of inv...

  9. Charity, Publicity, and the Donation Registry

    OpenAIRE

    Cooter, Robert D; Broughman, Brian

    2005-01-01

    Many Americans donate little or nothing to charity. Our social environment is the cause, not human nature. Experiments show that people are generous when their contributions are observable by others. Taking advantage of this fact, we propose a small policy change to increase transparency and elicit generosity. Specifically, we propose that the IRS establish a voluntary donation registry to publicize the proportion of income that individuals donate to charity. Although participation would be v...

  10. Charity, Publicity, and the Donation Registry

    OpenAIRE

    Cooter, Robert D; Broughman, Brian

    2005-01-01

    Many Americans donate little or nothing to charity. Our social environment is the cause, not human nature. Experiments show that people are generous when their contributions are observable by others. Taking advantage of this fact, we propose a small policy change to increase transparency and elicit generosity. Specifically, we propose that the IRS establish a voluntary donation registry to publicize the proportion of income that individuals donate to charity. Although participation would ...

  11. Registry of Mineral and Petroleum Titles

    Energy Technology Data Exchange (ETDEWEB)

    Maclellan, I. M.; Kaizer, J. L.; McCulloch, P. D.; Ratcliffe, R.; Wenning, A. S. [Nova Scotia Dept. of Natural Resources, Halifax, NS (Canada)

    2000-07-01

    Activities of the Nova Scotia Registry of Mineral and Petroleum Titles are described, including statistical information about staking and mining activity in the province during 1999. In terms of activities, the Registry receives applications and issues licenses and leases for mineral and petroleum rights, receives statements of exploration expenditures and assessment reports that pertain to renewal of licenses and leases, maintains maps showing the disposition of lands under license or lease, and maintains a system of prospector registration. In addition, the Registry processes applications for underground gas storage rights and treasure trove rights and maintains a database of information concerning production and employment in Nova Scotia mines and quarries. At the end 1999 there were 230,660 hectares under exploration licence. Exploration expenditures, including engineering, economic and feasibility studies during 1999 totalled $4.2 million, mostly by junior mining companies searching for industrial mineral commodities. Mining activity during 1999 generated revenues of $340 million. Coal production dropped by 25 per cent, due mainly to the closure of the Phalen Mine. Gypsum production was up to 7.9 million tonnes; shipments of cement, barite and clay products also increased during 1999; salt production remained unchanged from 1998 with 842,000 tonnes. Production of construction aggregates totalled 10.6 million tonnes, down slightly from the year before. Mineral industry employment was roughly 2,500 persons, down by 24 per cent from 1998 levels, due primarily to the closure of the Phalen Mine.

  12. Dairy consumption and ovarian cancer risk in the Netherlands Cohort Study on diet and cancer

    OpenAIRE

    Mommers, M.; Schouten, L J; Goldbohm, R. A.; Brandt, P.A. van den

    2006-01-01

    Ovary cancer risk in relation to consumption of dairy products was investigated using a self-administered questionnaire on dietary habits and other risk factors for cancer, which was completed in 1986 by 62 573 postmenopausal women participating in the Netherlands Cohort Study. Follow-up for cancer was implemented by annual record linkage with the Netherlands Cancer Registry and a nationwide pathology registry. After 11.3 years of follow-up, data of 252 incident epithelial ovarian cancer case...

  13. Population-based family studies : Genetic contribution to cancer development and survival?

    OpenAIRE

    Lindström, Linda Sofie

    2008-01-01

    Cancer affects essentially everyone, directly or indirectly. The aim of this thesis was to study the genetic and environmental factors in cancer development and survival. Our studies were based on a record linkage between several Swedish population-based registries, principally the Multi-Generation Register, which records familial relationships, the Swedish Cancer Registry, and the Cause of Death Registry. In summary, the Swedish Family-Cancer database comprised over 11 mill...

  14. The use of breast conserving surgery: linking insurance claims with tumor registry data

    International Nuclear Information System (INIS)

    The purpose of this study was to use insurance claims and tumor registry data to examine determinants of breast conserving surgery (BCS) in women with early stage breast cancer. Breast cancer cases registered in the Hawaii Tumor Registry (HTR) from 1995 to 1998 were linked with insurance claims from a local health plan. We identified 722 breast cancer cases with stage I and II disease. Surgical treatment patterns and comorbidities were identified using diagnostic and procedural codes in the claims data. The HTR database provided information on demographics and disease characteristics. We used logistic regression to assess determinants of BCS vs. mastectomy. The linked data set represented 32.8% of all early stage breast cancer cases recorded in the HTR during the study period. Due to the nature of the health plan, 79% of the cases were younger than 65 years. Women with early stage breast cancer living on Oahu were 70% more likely to receive BCS than women living on the outer islands. In the univariate analysis, older age at diagnosis, lower tumor stage, smaller tumor size, and well-differentiated tumor grade were related to receiving BCS. Ethnicity, comorbidity count, menopausal and marital status were not associated with treatment type. In addition to developing solutions that facilitate access to radiation facilities for breast cancer patients residing in remote locations, future qualitative research may help to elucidate how women and oncologists choose between BCS and mastectomy

  15. National dose registry in Switzerland - ten years of experience

    International Nuclear Information System (INIS)

    The Swiss National Dose Registry came into operation 1990. In the ten years of operating, the Registry has proved to be a valuable instrument for monitoring, controlling and registering of occupational radiation exposure in the country. When the Registry was designed, three focal points were taken into account: the Registry should fit in the rather complicated organization of the personal dosimetry in Switzerland, it should allow very high flexibility for future developments (computer and database technologies) and it should be possible to use it actively for different purposes and not only as an archive database. The experience has shown that the features of the Registry that allow fulfilling these conditions are crucial to a perfect operation of the Registry. (author)

  16. [Influence of registries on the quality of care].

    Science.gov (United States)

    Stengel, D; Dreinhöfer, K; Kostuj, T

    2016-06-01

    Registries are a topic of lively debate amongst all stakeholders in healthcare, politics and economics. In general, registries are national or international (prospective) databases documenting the current state of diagnostic, therapeutic and long-term outcome variables of subjects with a distinct condition or health problem. The access to and handling of registry information is subject to strict legal, methodological and ethical principles and regulations before these data can be scientifically utilized and reentered into the routine daily practice. Because of the representativeness and reality of data, registries are widely regarded as the backbone of health systems and budgets.Currently there is only indirect evidence that registries influence outcomes and the quality of care. Recent statistical techniques may allow quasi-experimental modelling of observational information. In orthopedic and trauma surgery, current and upcoming registries should be wisely utilized to develop and evaluate innovations and to make informed decisions relevant to care. PMID:27164976

  17. Australia and New Zealand Dialysis and Transplant Registry

    OpenAIRE

    McDonald, Stephen P

    2015-01-01

    The ANZDATA Registry includes all patients treated with renal replacement therapy (RRT) throughout Australia and New Zealand. Funding is predominantly from government sources, together with the non-government organization Kidney Health Australia. Registry operations are overseen by an Executive committee, and a Steering Committee with wide representation. Data is collected from renal units throughout Australia and New Zealand on a regular basis, and forwarded to the Registry. Areas covered in...

  18. Show Me The Data: The Pilot UK Research Data Registry

    Directory of Open Access Journals (Sweden)

    Alexander Ball

    2014-07-01

    Full Text Available The UK Research Data (Metadata Registry (UKRDR pilot project is implementing a prototype registry for the UK’s research data assets, enabling the holdings of subject-based data centres and institutional data repositories alike to be searched from a single location. The purpose of the prototype is to prove the concept of the registry, and uncover challenges that will need to be addressed if and when the registry is developed into a sustainable service. The prototype is being tested using metadata records harvested from nine UK data centres and the data repositories of nine UK universities.

  19. The Danish Cerebral Palsy Registry. A registry on a specific impairment

    DEFF Research Database (Denmark)

    Uldall, P; Michelsen, S I; Topp, M;

    2001-01-01

    form. The uptake area is eastern Denmark, covering about 50% of the population, but the rest of Denmark is planned to be included from 2001. The Registry is large, well established and validated, and the definitions and collection procedures have not changed through several decades. It therefore has...

  20. The national registry for radiation workers

    International Nuclear Information System (INIS)

    The National Registry for Radiation Workers (NRRW) was set up by the National Radiological Protection Board in 1976. The analysis of registry data has four aims: a) To determine whether there is any evidence of differences in the causes of and ages at death of workers exposed to different levels of radiation and, if any differences are found, whether it seems likely that they can be attributed to radiation. b) To estimate the magnitude of the risk, if any differences are found, that seem likely to be attributable to radiation. c) To estimate bounds to the possible risk for particular types of malignancy, such as leukemia. d) To compare the mortality experience of radiation workers with national mortality data and also with that of other industrial groups for whom data exist. If current estimates of the risks of ionizing radiation are correct, very few deaths will be induced in the study population and it will be impossible to detect them statistically. The NRRW currently includes records for over 60,000 individuals. 6 refs

  1. Viral Hepatitis and Liver Cancer on the Island of Guam

    OpenAIRE

    Haddock, RL; Paulino, YC; Bordallo, R

    2013-01-01

    Patient records from the Guam Cancer Registry were compared with patients listed in a health department viral hepatitis case registry. The number of liver cancer and viral hepatitis cases were compared by ethnicity. Hepatitis C was the form of viral hepatitis most common among liver cancer cases on Guam (63.3% of viral hepatitis-associated liver cancer cases). Since viral hepatitis is an important cause of liver cancer, studies such as the present one may provide the information necessary to ...

  2. The 2006 ERA-EDTA Registry annual report: a precis

    NARCIS (Netherlands)

    V.S. Stel; A. Kramer; C. Zoccali; K.J. Jager

    2009-01-01

    Introduction: This paper provides a summary of the 2006 European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry report. Methods: Data on renal replacement therapy (RRT) were available from 50 national and regional registries in 28 countries in Europe and bordering

  3. Data quality in the Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

    Ostgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Severinsen, Marianne Tang;

    2013-01-01

    The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data.......The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data....

  4. The growing number of hemophilia registries : Quantity vs. quality

    NARCIS (Netherlands)

    Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A

    2015-01-01

    Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an u

  5. Paper 6: EUROCAT member registries: organization and activities

    DEFF Research Database (Denmark)

    Greenlees, Ruth; Neville, Amanda; Addor, Marie-Claude;

    2011-01-01

    EUROCAT is a network of population-based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital a...

  6. Design of a prospective, multinational registry to evaluate patients hospitalized with hyponatremia: the HN Registry

    Directory of Open Access Journals (Sweden)

    Hauptman PJ

    2013-08-01

    Full Text Available Paul J Hauptman,1 Arthur Greenberg,2 Joseph G Verbalis,3 Alpesh Amin,4 Samuel Sigal,5 Jun Chiong,6 Sandra Chase,7 Joseph Dasta81Saint Louis University School of Medicine, St Louis, MO, USA; 2Duke University Medical Center, Durham, NC, USA; 3Georgetown University Medical Center, Washington, DC, USA; 4University of California, Irvine, CA, USA; 5New York University Langone Medical Center, New York, NY, USA; 6Loma Linda University, Loma Linda, CA, USA; 7Otsuka America Pharmaceutical, Inc, Princeton, NJ, USA; 8University of Texas at Austin, TX, USABackground: Hyponatremia is a prevalent condition in patients hospitalized across a broad range of conditions, including heart failure, cirrhosis, and the syndrome of inappropriate antidiuretic hormone (SIADH secretion. Whether present on admission or developing during hospitalization, hyponatremia has been associated with increased mortality, longer hospital stays, and higher costs. Little is known, however, about its management and outcomes outside of clinical trial settings.Methods: The Hyponatremia Registry (HN Registry is a prospective, observational, multicenter, multinational study of patients hospitalized with either hypervolemic hyponatremia (cirrhosis and heart failure in the United States or euvolemic hyponatremia (SIADH in both the United States and Europe. Study enrollment began in September 2010 at community, tertiary, and academic medical centers. Overall, the HN Registry is expected to enroll >5,000 patients with hyponatremia, at >280 sites. Data will be used to characterize demographic and clinical characteristics of patients hospitalized with hyponatremia, evaluate the comparative effectiveness of available treatment modalities, and document and compare length of hospital stay as a reflection of resource use associated with hospital management.Discussion: Despite better understanding of the clinical consequences, economic impact, and prognostic significance of euvolemic and hypervolemic

  7. 76 FR 36896 - Notice of Establishment of a New Plant Protection and Quarantine Stakeholder Registry

    Science.gov (United States)

    2011-06-23

    ... Protection and Quarantine Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA... of interest. FOR FURTHER INFORMATION CONTACT: For information on the PPQ Stakeholder Registry... Protection and Quarantine (PPQ) stakeholder registry is an email subscription service that allows...

  8. The GEOSS Component and Service Registry

    Science.gov (United States)

    Di, L.; Bai, Y.; Shen, D.; Shao, Y.; Shrestha, R.; Wang, H.; Nebert, D. D.

    2011-12-01

    Petabytes of Earth science data have been accumulated through space- and air-borne Earth observation programs during the last several decades. The data are valuable both scientifically and socioeconomically. The value of these data could be further increased significantly if the data from these programs can be easily discovered, accessed, integrated, and analyzed. The Global Earth Observation System of Systems (GEOSS) is addressing this need. Coordinated by the Group on Earth Observations (or GEO), a voluntary partnership of 86 governments, the European Commission, and 61 intergovernmental, international, and regional organizations has been working on implementing GEOSS for a number of years. After four years of international collaboration, the GEOSS Common Infrastructure (GCI) has been established. GCI consists of the Standards and Interoperability Registry (SIR), the Component and Service Registry (CSR), the GEO clearinghouse, and the GEO Portal. The SIR maintains the list of the public standards recognized by the GEO. CSR provides a centralized registry for available Earth Observation resources. The GEO clearinghouse works as a single search facility for GEOSS-wide resources and the GEO Portal provides an integrated Web-based interfaces for users. Since January 2007, researchers at CSISS, GMU have collaborated with officials from the Federal Geographic Data Committee (FGDC) on designing, implementing, maintaining, and upgrading CSR. Currently CSR provides the following capabilities for data providers: user registration, resource registration, and service interface registration. The CSR clients can discover the resources registered in CSR through OGC Catalog for Web (CSW), UUDI, and other standard interfaces. During the resource registration process, providers may define detailed descriptive information for their resources, in particular, the targeted societal benefit area and sub-areas of focus, and the targeted critical Earth Observations. The service

  9. Risk of prostate, ovarian, and endometrial cancer among relatives of women with breast cancer.

    OpenAIRE

    Tulinius, H.; Egilsson, V.; Olafsdóttir, G. H.; Sigvaldason, H

    1992-01-01

    OBJECTIVE--To investigate the risk of prostate, ovarian, and endometrial cancer among relatives of patients with breast cancer. DESIGN--Cohort study of 947 pedigrees in which the proband had breast cancer, linked with the Icelandic cancer registry. SETTING--Iceland. SUBJECTS--The 947 pedigrees included 29,725 people, of whom 1539 had breast cancer, 467 had prostate cancer, 135 ovarian cancer, and 105 endometrial cancer. MAIN OUTCOME MEASURES--Risk of prostate, ovarian, and endometrial cancer ...

  10. Glocal clinical registries: pacemaker registry design and implementation for global and local integration--methodology and case study.

    Directory of Open Access Journals (Sweden)

    Kátia Regina da Silva

    Full Text Available BACKGROUND: The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. PURPOSE: Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. METHODS AND RESULTS: We developed a device registry framework involving the following steps: (1 Data standards definition and representation of the research workflow, (2 Development of electronic case report forms using REDCap (Research Electronic Data Capture, (3 Data collection according to the clinical research workflow and, (4 Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5 Data quality control and (6 Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT we found 130 clinical trials which are potentially correlated with our pacemaker registry. CONCLUSION: This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re

  11. A Study on Risk Factors of Breast Cancer Among Patients Attending the Tertiary Care Hospital, in Udupi District

    OpenAIRE

    Ramchandra Kamath; Mahajan, Kamaleshwar S; Lena Ashok; Sanal, T S

    2013-01-01

    Background: Cancer has become one of the ten leading causes of death in India. Breast cancer is the most common diagnosed malignancy in India, it ranks second to cervical cancer. An increasing trend in incidence is reported from various registries of national cancer registry project and now India is a country with largest estimated number of breast cancer deaths worldwide. Aim: To study the factors associated with breast cancer. Objectives: To study the association between breast cancer and s...

  12. Lung cancer: district active treatment rates affect survival

    OpenAIRE

    CARTMAN, M.; Hatfield, A; Muers, M; Peake, M; Haward, R; Forman, D

    2002-01-01

    Design: A retrospective study of population based data held by the Northern & Yorkshire Cancer Registry and Information Service (NYCRIS), comparing active treatment rates for lung cancer with survival by districts.

  13. Canadian national dose registry of radiation workers 1951-2007: overview of research

    International Nuclear Information System (INIS)

    The National Dose Registry (NDR) of Canada is a unique resource for direct estimation of health risks associated with low radiation doses. This is the largest national occupational radiation exposure database, as it includes about 600,000 nuclear, industrial, medical and dental workers exposed to the average cumulative dose of several mSv. Analyses of the NDR data based on a cohort of about 200,000 workers first exposed before 1984 and followed through 1987 and 1988 for mortality and cancer incidence respectively, showed that mortality from most causes of death considered, and cancer incidence were lower than those in the general population, which is typical of occupational cohorts. There was a significant increase over the general population in the incidence of thyroid cancer and melanoma (however, this was not certain to be related to radiation exposure). Significant dose-response was found for mortality from all causes, all cancers, lung cancer, circulatory diseases, accidents, for incidence of all cancers, cancers of the rectum and lung, leukaemia, all cancers except lung and all cancers except leukaemia. In addition, in male workers significant dose-response was found for the incidence of colon, pancreatic and testicular cancers. Estimates of cancer risks based on mortality and incidence were higher than those in most other occupational cohorts and in the Atomic bomb survivors studies. Biologically-based analysis of lung cancer incidence in the NDR showed that for protracted exposure to low radiation doses there was a significant radiation effect on promotion and malignant conversion, but not on the initiation stage of carcinogenesis. This is in contrast to the findings for high-dose acute exposures in Atomic bomb survivors, where initiation and possibly promotion was found to be affected by radiation exposure. An inverse-dose-rate effect, i.e. increase in risk with protraction of a given dose, was found in the NDR cohort. (author)

  14. The National Anesthesia Clinical Outcomes Registry.

    Science.gov (United States)

    Liau, Adrian; Havidich, Jeana E; Onega, Tracy; Dutton, Richard P

    2015-12-01

    The Anesthesia Quality Institute (AQI) was chartered in 2008 by the American Society of Anesthesiologists to develop the National Anesthesia Clinical Outcomes Registry (NACOR). In this Technical Communication, we will describe how data enter NACOR, how they are authenticated, and how they are analyzed and reported. NACOR accepts case-level administrative, clinical, and quality capture data from voluntarily participating anesthesia practices and health care facilities in the United States. All data are transmitted to the AQI in summary electronic files generated by billing, quality capture, and electronic health care record software, typically on a monthly basis. All data elements are mapped to fields in the NACOR schema in accordance with a publicly available data dictionary. Incoming data are loaded into NACOR by AQI technologists and are subject to both manual and automated review to identify systematically missing elements, miscoding, and inadvertent corruption. Data are deidentified in compliance with Health Insurance Portability and Accountability Act regulations. The database server of AQI, which houses the NACOR database, is protected by 2 firewalls within the American Society of Anesthesiologists' network infrastructure; this system has not been breached. The NACOR Participant User File, a deidentified case-level dataset of information from NACOR, is available to researchers at participating institutions. NACOR architecture and the nature of the Participant User File include both strengths and weaknesses. PMID:26579661

  15. Italian registry of cardiac magnetic resonance

    International Nuclear Information System (INIS)

    Objectives: Forty sites were involved in this multicenter and multivendor registry, which sought to evaluate indications, spectrum of protocols, impact on clinical decision making and safety profile of cardiac magnetic resonance (CMR). Materials and methods: Data were prospectively collected on a 6-month period and included 3376 patients (47.2 ± 19 years; range 1–92 years). Recruited centers were asked to complete a preliminary general report followed by a single form/patient. Referral physicians were not required to exhibit any specific certificate of competency in CMR imaging. Results: Exams were performed with 1.5 T scanners in 96% of cases followed by 3 T (3%) and 1 T (1%) magnets and contrast was administered in 84% of cases. The majority of cases were performed for the workup of inflammatory heart disease/cardiomyopathies representing overall 55.7% of exams followed by the assessment of myocardial viability and acute infarction (respectively 6.9% and 5.9% of patients). In 49% of cases the final diagnosis provided was considered relevant and with impact on patient's clinical/therapeutic management. Safety evaluation revealed 30 (0.88%) clinical events, most of which due to patient's preexisting conditions. Radiological reporting was recorded in 73% of exams. Conclusions: CMR is performed in a large number of centers in Italy with relevant impact on clinical decision making and high safety profile

  16. Italian registry of cardiac magnetic resonance

    Energy Technology Data Exchange (ETDEWEB)

    Francone, Marco [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Di Cesare, Ernesto, E-mail: ernesto.dicesare@cc.univaq.it [Dipartimento di Scienze Cliniche Applicate e Biotecnologie, Università di L’Aquila (Italy); Cademartiri, Filippo [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pontone, Gianluca [IRCCS Centro Cardiologico Monzino (Italy); Lovato, Luigi [Policlinico S. Orsola Bologna (Italy); Matta, Gildo [Azienda ospedaliera G Brotzu Cagliari (Italy); Secchi, Francesco [IRCCS Policlinico San Donato, Radiology Unit, Milan (Italy); Maffei, Erica [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pradella, Silvia [Azienda Ospedaliera Universitaria Careggi (Italy); Carbone, Iacopo [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Marano, Riccardo [Policlinico Gemelli, Università Cattolica Roma (Italy); Bacigalupo, Lorenzo [Ospedale Galliera, Genova (Italy); Chiodi, Elisabetta [Ospedale S. Anna Ferrara (Italy); Donato, Rocco [Azienda Ospedaliera Universitaria G. Martino, Me (Italy); Sbarbati, Stefano [Ospedale Madre Giuseppina Vannini, Roma (Italy); De Cobelli, Francesco [IRCCS S. Raffaele, Università Vita Salute, Milano (Italy); Di Renzi, Paolo [Fate Bene Fratelli Isola tiberina, Roma (Italy); Ligabue, Guido; Mancini, Andrea [Azienda Ospedaliera-Universitaria Policlinico di Modena (Italy); Palmieri, Francesco [Diparimento di Diagnostica per immagini e radiologia interventistica, Ospedale S. Maria delle Grazie, Pozzuoli, Napoli (Italy); and others

    2014-01-15

    Objectives: Forty sites were involved in this multicenter and multivendor registry, which sought to evaluate indications, spectrum of protocols, impact on clinical decision making and safety profile of cardiac magnetic resonance (CMR). Materials and methods: Data were prospectively collected on a 6-month period and included 3376 patients (47.2 ± 19 years; range 1–92 years). Recruited centers were asked to complete a preliminary general report followed by a single form/patient. Referral physicians were not required to exhibit any specific certificate of competency in CMR imaging. Results: Exams were performed with 1.5 T scanners in 96% of cases followed by 3 T (3%) and 1 T (1%) magnets and contrast was administered in 84% of cases. The majority of cases were performed for the workup of inflammatory heart disease/cardiomyopathies representing overall 55.7% of exams followed by the assessment of myocardial viability and acute infarction (respectively 6.9% and 5.9% of patients). In 49% of cases the final diagnosis provided was considered relevant and with impact on patient's clinical/therapeutic management. Safety evaluation revealed 30 (0.88%) clinical events, most of which due to patient's preexisting conditions. Radiological reporting was recorded in 73% of exams. Conclusions: CMR is performed in a large number of centers in Italy with relevant impact on clinical decision making and high safety profile.

  17. Trends in the incidence of nonmelanoma skin cancer in Denmark 1978-2007: Rapid incidence increase among young Danish women

    DEFF Research Database (Denmark)

    Birch-Johansen, Fatima; Jensen, Allan; Mortensen, Lone;

    2010-01-01

    Nonmelanoma skin cancer (NMSC) is the most common cancer among Caucasian populations worldwide, and incidence rates are increasing. However, NMSC data are not routinely collected by cancer registries, but Denmark has extensive registration of NMSC in two nationwide population-based registries. We...... assessed incidence trends of NMSC in Denmark from 1978 to 2007. Data for basal cell carcinoma (BCC) and squamous cell carcinoma (SCC) were obtained from the Danish Cancer Registry and the Danish Registry of Pathology. For both genders, age-specific incidence rates and overall incidence rates, age...

  18. EPA Facility Registry Service (FRS): RCRA_TRANS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  19. EPA Facility Registry Service (FRS): ER_CERCLIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  20. EPA Facility Registry Service (FRS): ER_WWTP_NPDES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of Waste Water Treatment...

  1. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  2. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  3. EPA Facility Registry Service (FRS): AIRS_AQS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  4. EPA Facility Registry Service (FRS): AIRS_AFS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  5. EPA Facility Registry Service (FRS): ER_EPLAN

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  6. EPA Facility Registry Service (FRS): Facility Interests Dataset Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  7. EPA Facility Registry Service (FRS): AIRS_AFS_MAJOR

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  8. EPA Facility Registry Service (FRS): RCRA_INACTIVE

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...

  9. EPA Facility Registry Service (FRS): RCRA_ACTIVE

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of active hazardous...

  10. EPA Facility Registry Service (FRS): CERCLIS_NPL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...

  11. EPA Facility Registry Service (FRS): ER_TRI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  12. NOAA's Coastal and Marine Spatial Planning (CMSP) Data Registry

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — NOAA’s Coastal and Marine Spatial Planning (CMSP) Data Registry is a collection of Web-accessible NOAA geospatial data deemed essential for local, regional, or...

  13. EPA Facility Registry Service (FRS): ER_FRP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to Facility...

  14. EPA Facility Registry Service (FRS): ER_RCRATSD

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  15. EPA Facility Registry Service (FRS): ER_RMP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  16. EPA Facility Registry Service (FRS): Facility Interests Dataset

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  17. Environmental Protection Agency (EPA) Facility Registry Service (FRS) Power Plants

    Data.gov (United States)

    Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...

  18. EPA Facility Registry Service (FRS): RCRA_TSD

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of Hazardous Waste...

  19. EPA Facility Registry Service (FRS): RCRA_LQG

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  20. EPA Facility Registry Service (FRS): PCS_NPDES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  1. EPA Facility Registry Service (FRS): PCS_NPDES_MAJOR

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...

  2. EPA Facility Registry Service (FRS): ALL FRS INTERESTS LAYER

    Data.gov (United States)

    U.S. Environmental Protection Agency — This data provides location and attribute information on all facilities in EPA's Facility Registry Service (FRS) for a internet web feature service . The FRS is an...

  3. EPA Facility Registry Service (FRS): Wastewater Treatment Plants

    Data.gov (United States)

    U.S. Environmental Protection Agency — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS), EPA's Integrated Compliance Information System (ICIS)...

  4. EPA Facility Registry Service (FRS): ER_TSCA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  5. Encoding of public records and procedures in electronic registries

    OpenAIRE

    Παπαθεοδώρου, Χρήστος; Προκοπιάδου, Γεωργία; Μοσχόπουλος, Διονύσης

    2004-01-01

    An electronic registry is the main mechanism for the official distribution of public records, which are created within the framework of administrative procedures and business transactions. The encoding of public records within a registry is realized according to a certain format to facilitate information management. However, these formats do not refer to semantics, which are considered essential for: a) the description of the administrative procedures, and b) efficient information retrieval. ...

  6. The growing number of hemophilia registries: Quantity vs. quality.

    Science.gov (United States)

    Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A

    2015-05-01

    Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan-European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required. PMID:25669198

  7. The Entity Registry System. From concept to deployment

    OpenAIRE

    Gramada, Mihai

    2016-01-01

    The entity registry system (ERS) is a decentralized entity registry that can be used to replace the Web as a platform for publishing linked data when the latter is not available. In developing countries, where off-line is the default mode of operation, centralized linked data solutions fail to address the needs of the communities. Although the features are mostly completed, the system is not yet ready for deployment. This project aims to provide extensive tests and scalability investigations ...

  8. Canadian National Dose Registry of radiation workers: overview of research from 1951 through 2007

    International Nuclear Information System (INIS)

    The National Dose Registry (NDR) of Canada is a unique resource for a direct estimation of the potential health risks associated with low doses of ionizing radiation. This is the largest national occupational radiation exposure database, comprising with about 600000 records for nuclear, industrial, medical and dental workers. An analysis of NDR data based on a cohort 200000 workers first exposed before 1984 and 1988 for mortality and cancer incidence, respectively, revealed that the mortality from most causes of death considered was than that in the general population, which is typical of occupational cohorts. Although the same was also observed for cancer incidence, there was a significant increase in the incidence of thyroid cancer and melanoma which, however, was not clearly related to radiation exposure. A significant dose-response was found for mortality from all causes, all cancers, lung cancer, cardiovascular diseases, accidents, for incidence of all cancers, leukaemia, all cancers except lung, and all cancers except leukaemia. In addition, in male workers, a significant dose response was found for the incidence of colon, pancreatic and testicular cancers. The estimates of cancer risks (mortality and incidence) were higher those in most other occupational cohorts and in the studies on atomic bomb survivors. The biologically based dose-response models used to describe lung cancer incidence in the NDR showed that for a protracted exposure to low radiation doses there was a significant radiation effect on the promotion and malignant conversion, but not on the initiation stage of carcinogenesis.This stands in contrast for high-dose acute exposures in A-bomb survivors, where the initiation and possibly promotion were found to be affected by radiation exposure. Evidence of an inverse dose-effect (i.e an increase in the risk with a protraction of a given cumulative dose) was found in the NDR cohort. (author)

  9. Hepatic Arterial Therapy with Drug-Eluting Beads in the Management of Metastatic Pancreatic Carcinoma to the Liver: A Multi-Institutional Registry

    OpenAIRE

    Raffi Kotoyan; Tiffany Metzger; Cliff Tatum; Ken Robbins; Martin, Robert C.G.

    2012-01-01

    Introduction. There has been limited reporting on the use of hepatic-directed therapy in liver dominant hepatic metastases arising from pancreatic cancer. Methods. An IRB-approved prospective multi-institutional treatment registry of 885 patients undergoing 1458 treatments for primary or secondary cancers in the liver was evaluated from January 2007 to January 2011. Results. Ten patients underwent a total of 17 treatment sessions with drug-eluting beads (DEBs). Six patients received concurren...

  10. The Relative Contribution of Genetic and Environmental Factors to Cancer Risk and Cancer Mortality in Norway

    OpenAIRE

    Leuven, Edwin; Plug, Erik; Rønning, Marte

    2014-01-01

    Using Norwegian cancer registry data we study twin and non-twin siblings to decompose variation in cancer at most common sites and cancer mortality into a genetic, shared environment and individual (unshared environmental) component. Regardless the source of sibling variation, our findings indicate that genes dominate over shared environment in explaining relatively more of the variation in cancer at most common cancer sites (but lung and skin cancer) and cancer mortality. The vast majority o...

  11. Cancer in first-degree relatives and risk of testicular cancer in Denmark

    OpenAIRE

    Nordsborg, Rikke Baastrup; Meliker, Jaymie R.; Wohlfahrt, Jan; Melbye, Mads; Raaschou-Nielsen, Ole

    2011-01-01

    Familial aggregation of testicular cancer has been reported consistently, but it is less clear if there is any association between risk of testicular cancer and other cancers in the family. We conducted a population based case-control study to examine the relationship between risk of testicular cancer and 22 different cancers in first-degree relatives. We included 3297 cases of testicular cancer notified to the Danish Cancer Registry between 1991 and 2003. 6594 matched controls were selected ...

  12. Role of comorbidity on survival after radiotherapy and chemotherapy for nonsurgically treated lung cancer

    DEFF Research Database (Denmark)

    Mellemgaard, Anders; Lüchtenborg, Margreet; Iachina, Maria;

    2015-01-01

    BACKGROUND:: Comorbidity, such as diseases of the cardiovascular, pulmonary, and other systems, may influence prognosis in lung cancer and complicate its treatment. The performance status of patients, which is a known prognostic marker, may also be influenced by comorbidity. Due to the close link...... between tobacco smoking and lung cancer, and because lung cancer is often diagnosed in advanced ages (median age at diagnosis in Denmark is 70 years), comorbidity is present in a large proportion of lung cancer patients. METHODS:: Patients with any stage lung cancer who did not have surgical treatment...... were identified in the Danish Lung Cancer Registry. Danish Lung Cancer Registry collects data from clinical departments, the Danish Cancer Registry, Danish National Patient Registry, and the Central Population Register. A total of 20,552 patients diagnosed with lung cancer in 2005 to 2011 were...

  13. Gynecological cancer in Indonesia

    OpenAIRE

    Aziz, M. Farid

    2009-01-01

    To overview the status of gynecologic cancer in Indonesia. Information regarding Indonesia obtained from World Bank Report and Statistical Yearbook of Indonesia 2007, epidemiological data obtained from Histopathological Data of Cancer in Indonesia 2002, Department of Health-Registry Body of Indonesian Specialist of Pathology Association-Indonesian Cancer Society; Various Hospitals in big Cities in Indonesia. Indonesia is an Archipelago with a total area of 1,922,570.00 km2, the population is ...

  14. Lokaliseret cancer prostatae. Overlevelse og tab af leveår

    DEFF Research Database (Denmark)

    Brasso, Klaus; Friis, S; Juel, K;

    1998-01-01

    Computerized linkage between the Danish Cancer Registry and the Central Personal Registry was established. A total of 1459 men aged 55-74 years with newly diagnosed clinically localized prostate cancer in the period 1983-1987 were identified. Routine treatment in this period was observation and...

  15. Lokaliseret cancer prostatae. Overlevelse og tab af leveår

    DEFF Research Database (Denmark)

    Brasso, K; Friis, S; Juel, K;

    1998-01-01

    Computerized linkage between the Danish Cancer Registry and the Central Personal Registry was established. A total of 1459 men aged 55-74 years with newly diagnosed clinically localized prostate cancer in the period 1983-1987 were identified. Routine treatment in this period was observation and e...

  16. Trends in breast cancer in the elderly in Denmark, 1980-2012

    DEFF Research Database (Denmark)

    Jensen, Jeanette D; Cold, Søren; Holck Nielsen, Mette;

    2016-01-01

    Nordic countries, where the Danish data were delivered from the Danish Cancer Registry and the Danish Cause of Death Registry with follow-up for death or emigration until the end of 2013. Results The proportion of patients diagnosed with breast cancer over the age of 70 years increased with time to 29...

  17. Cancer incidence among mild steel and stainless steel welders and other metal workers

    DEFF Research Database (Denmark)

    Hansen, K S; Lauritsen, J M; Skytthe, A

    1996-01-01

    The cancer incidence in a historical cohort of 10,059 metal workers employed during the period 1964-1984 was investigated. Standardized incidence ratios (SIR) were calculated based on registry extracts from the Danish Cancer registry. Lifetime exposure data (occupational and other) were obtained ...

  18. The magnitude of cancer breast in India: a summary

    OpenAIRE

    Nandakumar, A.; Ramnath, T; Chaturvedi, Meesha

    2010-01-01

    Cancer of breast has emerged as the leading site of cancer in most urban populations of India. For the year 2007, there have been an estimated 82,000 new cases of cancer Breast in India. It is rapidly replacing cancer of cervix as the most important leading site of cancer among women. The data collected over the years from five urban population based cancer registries namely Bangalore, Bhopal, Chennai, Delhi and Mumbai, under the network of National Cancer Registry Programme (NCRP) have shown...

  19. European operative registry to avoid complications in operative gynecology.

    Science.gov (United States)

    Putz, Andreas; Bohlin, Tonje; Rakovan, Martin; Putz, Ariane Maria; De Wilde, Rudy Leon

    2016-08-01

    The aim of this study is to determine how complications can be avoided in gynecological minimally invasive surgery in Europe. The Norwegian Gynecological Endoscopic Registry (NGER) facilitates medical research over a long duration. Can experiences from the Norwegian registry be used to develop a European registry to avoid complications? To answer this question, we used the NGER data from February 2013 until March 2015 to analyze the complications of gynecological endoscopy. The registry includes sociodemographic factors, related comorbidity, previous surgery, present procedure, and intraoperative complications. Postoperative complications were identified with a questionnaire administered 4 weeks after surgery. The risk factors leading to complications in gynecological endoscopy were found to be obesity, diabetes mellitus, heart disease, hypertension, previous surgery due to cervical carcinoma in situ, and low educational level. Regional differences in the complication rate were noted. National web-based operation registries such as the NGER can identify the risk factors for complications of gynecological endoscopic surgery and can help improve the outcome after surgery. The experience from NGER can be used to establish a European register. PMID:26805611

  20. OCLC Registry of Digital Masters – Opportunities for European Cooperation

    Directory of Open Access Journals (Sweden)

    Janet Lees

    2005-11-01

    Full Text Available I would like to thank the Preservation Division for the invitation to participate in the programme today. I would also like to thank the LIBER Board for their interest in the early stages of this project culminating in the announcement LIBER President Erland Kolding Nielsen made last night about LIBER support and collaboration with OCLC PICA with respect to the Digital Registry. This initiative reflects my new role within OCLC PICA, which is to identify opportunities for joint development with our major shareholder OCLC, and sometimes 3rd parties such as LIBER. My main purpose today is to provide a descriptive paper to inform LIBER members about the OCLC Digital Registry and to outline the possible role for LIBER and its membership in a model for European participation. My presentation will be in three phases: the need for a registry, a description of the Registry and finally, and perhaps most importantly, to outline opportunities for LIBER and its members in establishing a model for European contribution. We are all familiar with the concept of a registry through our participation in union catalogues and perhaps also from our experience with microfilms through the European Register of Microform Masters (EROMM hosted by our friends in Göttingen.

  1. The Role of Environmental Factors in Digestive Cancer

    OpenAIRE

    Rene Lambert

    2016-01-01

    The risk of digestive cancer in each country is analyzed in cancer registries for Incidence and Mortality. Survival is estimated from registries with a correct follow-up. Estimated values of Incidence and Mortality, expressed as an age standardized rate (ASR) for 100 000 persons, for all the population of a country are also found in the WHO-IARC database Globocan, recently edited for the year 2008. At each site of digestive tumors, the variations between countries, in cancer incidence, mortal...

  2. Childhood cancer incidence in relation to sunlight exposure

    OpenAIRE

    Musselman, J R B; Spector, L G

    2010-01-01

    Background: There is increasing interest in the possible association between cancer incidence and vitamin D through its role as a regulator of cell growth and differentiation. Epidemiological studies in adults and one paediatric study suggest an inverse association between sunlight exposure and cancer incidence. Methods: We carried out an ecological study using childhood cancer registry data and two population-level surrogates of sunlight exposure, (1) latitude of the registry city or populat...

  3. The Effect of National Cancer Screening on Disparity Reduction in Cancer Stage at Diagnosis by Income Level

    OpenAIRE

    Jung, Hye-Min; Lee, Jin-Seok; Lairson, David R.; Kim, Yoon

    2015-01-01

    Background Early detection of cancer is an effective and efficient cancer management strategy. In South Korea, the National Health Insurance administers the National Cancer Screening Program to its beneficiaries. We examined the impact of the National Cancer Screening Program on socioeconomic disparities in cancer stage at diagnosis. Methods Cancer patients registered in the Korean Central Cancer Registry from January 1, 2010 to December 31, 2010 with a diagnosis of gastric cancer (n = 22,470...

  4. Evaluation of gemtuzumab ozogamycin associated sinusoidal obstructive syndrome: Findings from an academic pharmacovigilance program review and a pharmaceutical sponsored registry

    Science.gov (United States)

    Magwood-Golston, Jametta S.; Kessler, Samuel; Bennett, Charles L.

    2016-01-01

    Background In 2000, the Food and Drug Administration (FDA) approved gemtuzumab ozogamycin for monotherapy for older patients with relapsed AML. A 0.9% rate of hepatic sinusoidal obstructive syndrome (SOS) was noted in licensing trials. In 2001, FDA received reports of 14 GO-associated SOS cases from MD Anderson Cancer Center. A State of South Carolina/National Cancer Institute funded pharmacovigilance program and a manufacturer sponsored registry independently evaluated this concern. Methods The manufacturer’s registry and the academic program focused on risk factors and incidence of GO-associated SOS in routine clinical practice and clinical trial settings, respectively. Comparisons were made of findings and dissemination efforts from the two studies. Results Retrospective analysis of clinical trials by the academic initiative identified 99 cases of SOS among 221 GO-treated stem cell patients and 649 patients who did not undergo HSCTs. SOS rates were 3% when GO was administered at doses ≤6 mg/m2 as monotherapy or with non-hepatotoxic agents; 28% when administered with 6-thioguanine, a hepatotoxic agent; 15% when administered as monotherapy at doses at a dose of 9 mg/m2, and between 15% and 40% if a stem cell transplant (SCT) was performed within 3 months of GO administration. Death from SOS occurred in 33% of the cases. The manufacturer’s registry prospectively evaluated 482 GO-treated patients who received a mean dose of 7.8 mg/m2. Overall, 41% received concomitant chemotherapy, 18% had undergone prior SCT, 9.1% developed SOS, and death from SOS occurred in 60% of the SOS cases. Findings from each initiative were disseminated at national conferences and in peer-reviewed manuscripts beginning in 2003. Conclusion Retrospective review of clinical trials, case series, and FDA reports and prospective registries can provide important information on safety signals initially identified in licensing trials. PMID:27030962

  5. REAC/TS Radiation Accident Registry: An Overview

    Energy Technology Data Exchange (ETDEWEB)

    Doran M. Christensen, DO, REAC/TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician

    2012-12-12

    Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater share of deaths has occurred in medical settings.

  6. Cancer prostatae hos maend under 65 år. Forekomst og behov for udredning

    DEFF Research Database (Denmark)

    Brasso, K; Friis, S; Kjaer, S K;

    1997-01-01

    Based on information from the nationwide Danish Cancer Registry, the development in prostate cancer incidence among Danish men under 65 years is reviewed. Changes in incidence rate, clinical stage and the number of possible candidates for radical treatment are discussed....

  7. Choropleth Map Design for Cancer Incidence, Part 2

    Directory of Open Access Journals (Sweden)

    Thomas B. Richards, MD

    2010-01-01

    Full Text Available Choropleth maps are commonly used in cancer reports and community discussions about cancer rates. Cancer registries increasingly use geographic information system techniques. The Centers for Disease Control and Prevention’s Division of Cancer Prevention and Control convened a Map Work Group to help guide application of geographic information system mapping techniques and to promote choropleth mapping of data from central cancer registries supported by the National Program of Cancer Registries, especially for comprehensive cancer control planning and evaluation purposes. In this 2-part series, we answer frequently asked questions about choropleth map design to display cancer incidence data. We recommend that future initiatives consider more advanced mapping, spatial analysis, and spatial statistics techniques and include usability testing with representatives of state and local programs and other cancer prevention partners.

  8. Patient-reported outcome measures in arthroplasty registries.

    Science.gov (United States)

    Rolfson, Ola; Eresian Chenok, Kate; Bohm, Eric; Lübbeke, Anne; Denissen, Geke; Dunn, Jennifer; Lyman, Stephen; Franklin, Patricia; Dunbar, Michael; Overgaard, Søren; Garellick, Göran; Dawson, Jill

    2016-07-01

    The International Society of Arthroplasty Registries (ISAR) Steering Committee established the Patient-Reported Outcome Measures (PROMs) Working Group to convene, evaluate, and advise on best practices in the selection, administration, and interpretation of PROMs and to support the adoption and use of PROMs for hip and knee arthroplasty in registries worldwide. The 2 main types of PROMs include generic (general health) PROMs, which provide a measure of general health for any health state, and specific PROMs, which focus on specific symptoms, diseases, organs, body regions, or body functions. The establishment of a PROM instrument requires the fulfillment of methodological standards and rigorous testing to ensure that it is valid, reliable, responsive, and acceptable to the intended population. A survey of the 41 ISAR member registries showed that 8 registries administered a PROMs program that covered all elective hip or knee arthroplasty patients and 6 registries collected PROMs for sample populations; 1 other registry had planned but had not started collection of PROMs. The most common generic instruments used were the EuroQol 5 dimension health outcome survey (EQ-5D) and the Short Form 12 health survey (SF-12) or the similar Veterans RAND 12-item health survey (VR-12). The most common specific PROMs were the Hip disability and Osteoarthritis Outcome Score (HOOS), the Knee injury and Osteoarthritis Outcome Score (KOOS), the Oxford Hip Score (OHS), the Oxford Knee Score (OKS), the Western Ontario and McMaster Universities Arthritis Index (WOMAC), and the University of California at Los Angeles Activity Score (UCLA). PMID:27168175

  9. Cancer rehabilitation indicators for Europe

    DEFF Research Database (Denmark)

    Baili, Paolo; Hoekstra-Weebers, Josette; Van Hoof, Elke;

    2013-01-01

    ; incomplete participation in surveys could lead to bias; and national confidentiality laws in some cases prohibit cancer registries from approaching patients. Although these studies are expensive and difficult to perform, but as the number of cancer survivors increases, it is important to document their needs...

  10. Regulatory insight into the European human pluripotent stem cell registry.

    Science.gov (United States)

    Kurtz, Andreas; Stacey, Glyn; Kidane, Luam; Seriola, Anna; Stachelscheid, Harald; Veiga, Anna

    2014-12-01

    The European pluripotent stem cell registry aims at listing qualified pluripotent stem cell (PSC) lines that are available globally together with relevant information for each cell line. Specific emphasis is being put on documenting ethical procurement of the cells and providing evidence of pluripotency. The report discusses the tasks and challenges for a global PSC registry as an instrument to develop collaboration, to access cells from diverse resources and banks, and to implement standards, and as a means to follow up usage of cells and support adherence to regulatory and scientific standards and transparency for stakeholders. PMID:25457963

  11. Service Registry: A Key Piece for Enhancing Reuse in SOA

    Directory of Open Access Journals (Sweden)

    Juan Pablo García-González

    2013-01-01

    Full Text Available One of the promises of adopting a service-oriented approach in organizations is the potential cost savings that result from the reuse of existing services. A service registry is one of the fundamental pieces of service oriented architecture (SOA for achieving reuse. It refers to a place in which service providers can impart information about their offered services and potential clients can search for services. In this article, we provide advice for implementing an enterprise-wide service registry. We also discuss open issues in industry and academia that affect the management of service- repository information.

  12. Using registries to identify type 2 diabetes patients

    Directory of Open Access Journals (Sweden)

    Thomsen RW

    2014-12-01

    Full Text Available Reimar W Thomsen, Henrik Toft Sørensen Department of Clinical Epidemiology, Aarhus University Hospital, DenmarkValidation studies of health care registries are considered boring by some. An epidemiologist recently conducted a validation study based on the Danish National Registry of Patients and received the following unflattering comment from a reviewer: “A good example of a paper of limited scope that probably would only be published electronically where space is unlimited”. We do not subscribe to this point of view. See Original Research article

  13. CMS Run Registry: Data Certification Bookkeeping and Publication System

    Science.gov (United States)

    Rapsevicius, V.; CMS DQM Group

    2011-12-01

    The Run Registry of the CMS experiment at the LHC is the central tool for the tracking of the data quality monitoring and data certification workflows and the bookkeeping of the results. It consists of a Java web application frontend which connects to an Oracle database in the backend. The current production version 2 of the Run Registry application, was deployed in the beginning of the year 2010, before the LHC data taking started, and has since then undergone a number of full release cycles. In this note we describe the architecture and the experiences from the first year of datataking.

  14. IVOA Recommendation: Registry Relational Schema Version 1.0

    CERN Document Server

    Demleitner, Markus; Molinaro, Marco; Greene, Gretchen; Dower, Theresa; Perdikeas, Menelaos

    2015-01-01

    Registries provide a mechanism with which VO applications can discover and select resources - first and foremost data and services - that are relevant for a particular scientific problem. This specification defines an interface for searching this resource metadata based on the IVOA's TAP protocol. It specifies a set of tables that comprise a useful subset of the information contained in the registry records, as well as the table's data content in terms of the XML VOResource data model. The general design of the system is geared towards allowing easy authoring of queries.

  15. Initial experiences of a multicenter transluminal revascularization registry

    International Nuclear Information System (INIS)

    This paper establishes a multicenter registry for collection and analysis of data from a large series of patients undergoing percutaneous transluminal revascularization of peripheral vascular lesions. The registry began as a joint collaboration between the radiology departments of Thomas Jefferson University Hospital and the University of Pennsylvania, through the Philadelphia Society of Angiography/Interventional Radiology. The American College of Radiology research office in Philadelphia is used as the data collection center. A detailed data form has been developed. It includes information about patient history, procedure indications, lesion location and morphology, techniques used, immediate angiographic and clinical outcome, and clinical follow-up at intervals up to 5 years

  16. The Medical Birth Registry of Norway – An international perspective

    Directory of Open Access Journals (Sweden)

    Allen J. Wilcox

    2007-01-01

    Full Text Available Some of the most practical questions of perinatal medicine are regarding couples who have had pregnancy problems in the past, and their risk of having such problems in future pregnancies. For example, if a couple has a child with a birth defect, what are their chances that their next child will have a defect? The key to answering such questions is the availability of linked data such as those provided by the Medical Birth Registry of Norway. Such linked data provide a unique resource for addressing a broad range of questions in perinatal epidemiology. The Medical Birth Registry of Norway has been a pioneer in answering such questions.

  17. Burden and Chemoprevention of Skin Cancer

    NARCIS (Netherlands)

    L.M. Hollestein (Loes)

    2013-01-01

    markdownabstract__Abstract__ The incidence of skin cancer is increasing in the Netherlands since 1989, the first year of the Netherlands Cancer Registry (NCR). In 2010 more than 43,000 patients were newly diagnosed with skin cancer in the Netherlands. During a life time at least 1 in 5 persons livi

  18. Income in Adult Survivors of Childhood Cancer.

    OpenAIRE

    Wengenroth, Laura; Sommer, Grit; Schindler, Matthias, 1968-; Spycher, Ben D.; von der Weid, Nicolas X.; Stutz-Grunder, Eveline; Michel, Gisela; Kuehni, Claudia E.

    2016-01-01

    INTRODUCTION Little is known about the impact of childhood cancer on the personal income of survivors. We compared income between survivors and siblings, and determined factors associated with income. METHODS As part of the Swiss Childhood Cancer Survivor Study (SCCSS), a questionnaire was sent to survivors, aged ≥18 years, registered in the Swiss Childhood Cancer Registry (SCCR), diagnosed at age

  19. A report of the Malaysian dialysis registry of the National Renal Registry, Malaysia.

    Science.gov (United States)

    Lim, Y N; Lim, T O; Lee, D G; Wong, H S; Ong, L M; Shaariah, W; Rozina, G; Morad, Z

    2008-09-01

    The Malaysian National Renal Registry was set up in 1992 to collect data for patients on renal replacement therapy (RRT). We present here the report of the Malaysian dialysis registry. The objectives of this papar are: (1) To examine the overall provision of dialysis treatment in Malaysia and its trend from 1980 to 2006. (2) To assess the treatment rate according to the states in the country. (3) To describe the method, location and funding of dialysis. (4) To characterise the patients accepted for dialysis treatment. (5) To analyze the outcomes of the dialysis treatment. Data on patients receiving dialysis treatment were collected at initiation of dialysis, at the time of any significant outcome, as well as yearly. The number of dialysis patients increased from 59 in 1980 to almost 15,000 in 2006. The dialysis acceptance rate increased from 3 per million population in 1980 to 116 per million population in 2006, and the prevalence rate from 4 to 550 per million population over the same period. The economically advantaged states of Malaysia had much higher dialysis treatment rates compared to the less economically advanced states. Eighty to 90% of new dialysis patients were accepted into centre haemodialysis (HD), and the rest into the chronic ambulatory peritoneal dialysis (CAPD) programme. The government provided about half of the funding for dialysis treatment. Patients older than 55 years accounted for the largest proportion of new patients on dialysis since the 1990s. Diabetes mellitus has been the main cause of ESRD and accounted for more than 50% of new ESRD since 2002. Annual death rate averaged about 10% on HD and 15% on CAPD. The unadjusted 5-year patient survival on both HD and CAPD was about 80%. Fifty percent of dialysis patients reported very good median QoL index score. About 70% of dialysis patients were about to work full or part time. There has been a very rapid growth of dialysis provision in Malaysia particularly in the older age groups. ESRD

  20. Opioids and breast cancer recurrence

    DEFF Research Database (Denmark)

    Cronin-Fenton, Deirdre P; Heide-Jørgensen, Uffe; Ahern, Thomas P;

    2015-01-01

    BACKGROUND: Opioids may alter immune function, thereby potentially affecting cancer recurrence. The authors investigated the association between postdiagnosis opioid use and breast cancer recurrence. METHODS: Patients with incident, early stage breast cancer who were diagnosed during 1996 through...... 2008 in Denmark were identified from the Danish Breast Cancer Cooperative Group Registry. Opioid prescriptions were ascertained from the Danish National Prescription Registry. Follow-up began on the date of primary surgery for breast cancer and continued until breast cancer recurrence, death......, emigration, 10 years, or July 31, 2013, whichever occurred first. Cox regression models were used to compute hazard ratios and 95% confidence intervals associating breast cancer recurrence with opioid prescription use overall and by opioid type and strength, immunosuppressive effect, chronic use (≥6 months...

  1. 78 FR 1825 - Notice of Establishment of an Animal and Plant Health Inspection Service Stakeholder Registry

    Science.gov (United States)

    2013-01-09

    ... Inspection Service Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION... Service stakeholder registry. FOR FURTHER INFORMATION CONTACT: Ms. Hallie Zimmers, Advisor for State and Stakeholder Relations, Legislative and Public Affairs, APHIS, room 1147, 1400 Independence Avenue...

  2. The National Registry of Evidence-based Programs and Practices (NREPP)

    Data.gov (United States)

    U.S. Department of Health & Human Services — The National Registry of Evidence-based Programs and Practices (NREPP) is a searchable online registry of mental health and substance abuse interventions that have...

  3. BioSWR--semantic web services registry for bioinformatics.

    Directory of Open Access Journals (Sweden)

    Dmitry Repchevsky

    Full Text Available Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL. Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL. BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.

  4. National Marrow Donor Program and Be The Match Registry

    Science.gov (United States)

    ... version of this page please turn Javascript on. Feature: Bone Marrow Transplants The National Marrow Donor Program and Be The Match Registry Past Issues / Summer 2011 Table of Contents Creating connections. Saving lives. Founded in 1987 by the federal government, the ...

  5. The European Registry for Patients with Mechanical Circulatory Support (EUROMACS)

    DEFF Research Database (Denmark)

    de By, Theo M M H; Mohacsi, Paul; Gummert, Jan; Bushnaq, Hasan; Krabatsch, Thomas; Gustafsson, Finn; Leprince, Pascal; Martinelli, Luigi; Meyns, Bart; Morshuis, Michiel; Netuka, Ivan; Potapov, Evgenij; Zittermann, Armin; Delmo Walter, Eva Maria; Hetzer, Roland

    2015-01-01

    other founding international members. It aims to promote scientific research to improve care of end-stage heart failure patients with ventricular assist device or a total artificial heart as long-term mechanical circulatory support. Likewise, the organization aims to provide and maintain a registry of...

  6. Chemical Abstracts Service Chemical Registry System: History, Scope, and Impacts.

    Science.gov (United States)

    Weisgerber, David W.

    1997-01-01

    Describes the history, scope, and applications of the Chemical Abstracts Service Chemical Registry System, a computerized database that uniquely identifies chemical substances on the basis of their molecular structures. Explains searching the system is and discusses its use as an international resource. (66 references) (Author/LRW)

  7. How Suitable Are Registry Data for Recurrence Risk Calculations?

    DEFF Research Database (Denmark)

    Ellesøe, Sabrina Gade; Jensen, Anders Boeck; Ängquist, Lars Henrik;

    2016-01-01

    BACKGROUND: Congenital heart disease (CHD) occurs in approximately 1% of all live births, and 3% to 8% of these have until now been considered familial cases, defined as the occurrence of two or more affected individuals in a family. The validity of CHD diagnoses in Danish administrative registry...

  8. BioSWR--semantic web services registry for bioinformatics.

    Science.gov (United States)

    Repchevsky, Dmitry; Gelpi, Josep Ll

    2014-01-01

    Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license. PMID:25233118

  9. BioSWR – Semantic Web Services Registry for Bioinformatics

    Science.gov (United States)

    Repchevsky, Dmitry; Gelpi, Josep Ll.

    2014-01-01

    Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license. PMID:25233118

  10. hPSCreg--the human pluripotent stem cell registry.

    Science.gov (United States)

    Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas

    2016-01-01

    The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179

  11. The United States Transuranium and Uranium Registries: 1968-1993

    International Nuclear Information System (INIS)

    The historical development and scientific contributions of the United States Transuranium and Uranium Registries are briefly traced. Further to encourage radiobiology studies and to provide unique materials for research in other areas such as biomarkers including oncogenes, the Registries have established the National Human Radiobiology Tissue Repository, which includes more than 20,000 tissue samples and solutions, histopathology slides, and related materials from persons with internal depositions, including radium dial painters, available to other investigators for collaborative or individual research purposes. Emphasis is given to recent findings of the Registries with respect to biokinetic models for the actinides and the post-mortem analysis of USTUR Case 0246, an individual who suffered a massive intake of 241Am eleven years prior to death from heart disease. Registries studies show that, in addition to skeleton and liver, muscle is an appreciable reservoir for both plutonium and americium. The systemic biokinetics of plutonium and americium are well represented by a three-compartment model that includes skeleton, liver, and muscle, although the biokinetic parameters of these two transuranium elements differ significantly. Initial uptake fractions for plutonium are 0.4, 0.4, and 0.2, with residence half-times of 50, 20 and 10 years, respectively, for skeleton, liver and muscle. For americium, the comparable uptake fractions are 0.45, 0.25, 0.3 with residence half-times of 50, 2.5 and 10 years for the three compartments. (author)

  12. Is it feasible to merge data from national shoulder registries?

    DEFF Research Database (Denmark)

    Rasmussen, Jeppe V; Brorson, Stig; Hallan, Geir; Dale, Håvard; Äärimaa, Ville; Mokka, Jari; Jensen, Steen L; Fenstad, Anne M; Salomonsson, Björn

    2016-01-01

    BACKGROUND: The Nordic Arthroplasty Register Association was initiated in 2007, and several papers about hip and knee arthroplasty have been published. Inspired by this, we aimed to examine the feasibility of merging data from the Nordic national shoulder arthroplasty registries by defining a com...

  13. Process produces accurate registry between circuit board prints

    Science.gov (United States)

    1966-01-01

    Tapes and quick-mount circles of contrasting colors aid in obtaining precise registry between the two circuits of two-sided printed circuit boards. The tapes and circles are mounted on opposite sides of transparent plastic film to define the conductive path and feed-through hole locations.

  14. German cancer statistics 2004

    Directory of Open Access Journals (Sweden)

    Ziese Thomas

    2010-02-01

    Full Text Available Abstract Background For years the Robert Koch Institute (RKI has been annually pooling and reviewing the data from the German population-based cancer registries and evaluating them together with the cause-of-death statistics provided by the statistical offices. Traditionally, the RKI periodically estimates the number of new cancer cases in Germany on the basis of the available data from the regional cancer registries in which registration is complete; this figure, in turn, forms the basis for further important indicators. Methods This article gives a brief overview of current indicators - such as incidence, prevalence, mortality, survival rates - on the most common types of cancer, as well as important ratios on the risks of developing and dying of cancer in Germany. Results According to the latest estimate, there were a total of 436,500 new cancer cases in Germany in 2004. The most common cancer in men is prostate cancer with over 58,000 new cases per annum, followed by colorectal and lung cancer. In women, breast cancer remains the most common cancer with an estimated 57,000 new cases every year, also followed by colorectal cancer. These and further findings on selected cancer sites can be found in the current brochure on "Cancer in Germany", which is regularly published by the RKI together with the Association of Population-based Cancer Registries in Germany (GEKID. In addition, the RKI made cancer-prevalence estimates and calculated current morbidity and mortality risks at the federal level for the first time. According to these figures, the 5-year partial prevalence - i.e. the total number of cancer patients diagnosed over the past five years who are currently still living - exceeds 600,000 in men; the figure is about the same among women. Here, too, the most common cancers are prostate cancer in men and breast cancer in women. The lifetime risk of developing cancer, which is more related to the individual, is estimated to be higher among

  15. A FACTOR ANALYTIC APPROACH TO USERS PERFORMANCE EVALUATION OF ONDO STATE LAND REGISTRY

    OpenAIRE

    Babajide OJO; Michael Adedayo ADEBAYO

    2012-01-01

    Land registry worldwide provides best service for guaranteeing ownership of land and facilitates property transactions. The development and sustenance of effective land registry is vital for creation of free movement of interests in land. The land registry provides ready access to up-to-date land information and ensures confident dealings in property and security of title. One of the goals of land registry in developing economy and in Nigeria in particular, is to render services to users in s...

  16. The Toxicology Investigators Consortium Case Registry--the 2012 experience.

    Science.gov (United States)

    Wiegand, Timothy; Wax, Paul; Smith, Eric; Hart, Katherine; Brent, Jeffrey

    2013-12-01

    In 2010, the American College of Medical Toxicology (ACMT) established its Case Registry, the Toxicology Investigators Consortium (ToxIC). All cases are entered prospectively and include only suspected and confirmed toxic exposures cared for at the bedside by board-certified or board-eligible medical toxicologists at its participating sites. The primary aims of establishing this Registry include the development of a realtime toxico-surveillance system in order to identify and describe current or evolving trends in poisoning and to develop a research tool in toxicology. ToxIC allows for extraction of data from medical records from multiple sites across a national and international network. All cases seen by medical toxicologists at participating institutions were entered into the database. Information characterizing patients entered in 2012 was tabulated and data from the previous years including 2010 and 2011 were included so that cumulative numbers and trends could be described as well. The current report includes data through December 31st, 2012. During 2012, 38 sites with 68 specific institutions contributed a total of 7,269 cases to the Registry. The total number of cases entered into the Registry at the end of 2012 was 17,681. Emergency departments remained the most common source of consultation in 2012, accounting for 61 % of cases. The most common reason for consultation was for pharmaceutical overdose, which occurred in 52 % of patients including intentional (41 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,422 entries in 13 % of cases) non-opioid analgesics (1,295 entries in 12 % of cases), opioids (1,086 entries in 10 % of cases) and antidepressants (1,039 entries in 10 % of cases). N-acetylcysteine (NAC) was the most common antidote administered in 2012, as it was in previous years, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab

  17. Improving Diabetes Outcomes Using a Web-Based Registry and Interactive Education: A Multisite Collaborative Approach

    Science.gov (United States)

    Morrow, Robert W.; Fletcher, Jason; Kelly, Kim F.; Shea, Laura A.; Spence, Maureen M.; Sullivan, Janet N.; Cerniglia, Joan R.; Yang, YoonJung

    2013-01-01

    Introduction: To support the adoption of guideline concordant care by primary care practices, the New York Diabetes Coalition (NYDC) promoted use of an electronic diabetes registry and developed an interactive educational module on using the registry and improving patient communication. The NYDC hypothesized that use of a registry with immediate…

  18. The Euro-VO Registry, Re-engineering the Back-end

    Science.gov (United States)

    Arviset, C.; Perdikeas, M.; Osuna, P.; Gonzalez, J.

    2015-09-01

    The Euro-VO Registry, located, developed and operated at ESAC, is one of the full searchable registries available worldwide, gathering information about all VO-compliant resources. The Euro-VO Registry serves as a registration point for European - and other countries- VO actors and data centres wishing to publish VO services. It harvests other registries to ensure its completeness so VO applications developers and VO users can use it to discover all VO resources, from Europe and from all other VO projects. The Euro-VO Registry provides as well a harvesting interface to other registries in the world to make sure the European VO services are also included in all other worldwide full registries. In particular, the new Euro-VO registry will be supporting the new RegTAP search interface for the relational registry allowing arbitrary ADQL queries against its contents over a compliant TAP service. The recently obsolete (for future developments) SOAP-based legacy search interface will also be supported for backwards compatibility purposes. Furthermore, in the context of the IVOA, some quality control and curation procedures for the registry resources are being defined. The Euro-VO Registry implements these procedures to ensure the high quality of the VO resources it references. This paper gives an overview of the recent development of the new Euro-VO Registry, together with its new curation facilities, both of which are being performed under a contract awarded to Neuropublic, under ESA special initiative to Greece.

  19. Limitations of drug registries to evaluate orphan medicinal products for the treatment of lysosomal storage disorders

    NARCIS (Netherlands)

    C.E.M. Hollak; J.M.F.G. Aerts; S. Aymé; J. Manuel

    2011-01-01

    Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and n

  20. Home enteral nutrition in Spain: NADYA registry 2011-2012

    Directory of Open Access Journals (Sweden)

    Carmina Wanden-Berghe

    2014-06-01

    Full Text Available Objective: To describe the results of the home enteral nutrition (HEN registry of the NADYA-SENPE group in 2011 and 2012. Material and methods: We retrieved the data of the patients recorded from January 1st 2011 to December 31st 2012. Results: There were 3021 patients in the registry during the period from 29 hospitals, which gives 65.39 per million inhabitants. 97.95% were adults, 51.4% male. Mean age was 67.64 ± 19.1, median age was 72 years for adults and 7 months for children. Median duration with HEN was 351 days and for 97.5% was their first event with HEN. Most patients had HEN because of neurological disease (57.8%. Access route was nasogastric tube for 43.5% and gastrostomy for 33.5%. Most patients had limited activity level and, concerning autonomy, 54.8% needed total help. Nutritional formula was supplied from chemist's office to 73.8% of patients and disposables, when necessary, was supplied from hospitals to 53.8% of patients. HEN was finished for 1,031 patients (34.1% during the period of study, 56.6% due to decease and 22.2% due to recovery of oral intake. Conclusions: Data from NADYA-SENPE registry must be explained cautiously because it is a non-compulsory registry. In spite of the change in the methodology of the registry in 2010, tendencies regarding HEN have been maintained, other than oral route.

  1. Developing a provisional and national renal disease registry for Iran

    Directory of Open Access Journals (Sweden)

    Sima Ajami

    2015-01-01

    Full Text Available Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients′ characteristics as well as risk factors which eventually leads to making better decisions.

  2. Inception of a national multidisciplinary registry for stereotactic radiosurgery.

    Science.gov (United States)

    Sheehan, Jason P; Kavanagh, Brian D; Asher, Anthony; Harbaugh, Robert E

    2016-01-01

    Stereotactic radiosurgery (SRS) represents a multidisciplinary approach to the delivery of ionizing high-dose radiation to treat a wide variety of disorders. Much of the radiosurgical literature is based upon retrospective single-center studies along with a few randomized controlled clinical trials. More timely and effective evidence is needed to enhance the consistency and quality of and clinical outcomes achieved with SRS. The authors summarize the creation and implementation of a national SRS registry. The American Association of Neurological Surgeons (AANS) through NeuroPoint Alliance, Inc., started a successful registry effort with its lumbar spine initiative. Following a similar approach, the AANS and NeuroPoint Alliance collaborated with corporate partners and the American Society for Radiation Oncology to devise a data dictionary for an SRS registry. Through administrative and financial support from professional societies and corporate partners, a framework for implementation of the registry was created. Initial plans were devised for a 3-year effort encompassing 30 high-volume SRS centers across the country. Device-specific web-based data-extraction platforms were built by the corporate partners. Data uploaders were then used to port the data to a common repository managed by Quintiles, a national and international health care trials company. Audits of the data for completeness and veracity will be undertaken by Quintiles to ensure data fidelity. Data governance and analysis are overseen by an SRS board comprising equal numbers of representatives from the AANS and NeuroPoint Alliance. Over time, quality outcome assessments and post hoc research can be performed to advance the field of SRS. Stereotactic radiosurgery offers a high-technology approach to treating complex intracranial disorders. Improvements in the consistency and quality of care delivered to patients who undergo SRS should be afforded by the national registry effort that is underway. PMID

  3. Medical complications in patients with stroke: data validity in a stroke registry and a hospital discharge registry

    Directory of Open Access Journals (Sweden)

    Annette Ingeman

    2010-03-01

    Full Text Available Annette Ingeman1, Grethe Andersen2, Heidi H Hundborg1, Søren P Johnsen11Department of Clinical Epidemiology, 2Department of Neurology, Aarhus University Hospital, DenmarkBackground: Stroke patients frequently experience medical complications; yet, data on incidence, causes, and consequences are sparse.Objective: To examine the data validity of medical complications among patients with stroke in a population-based clinical registry and a hospital discharge registry.Methods: We examined the predictive values, sensitivity and specificity of medical complications among patients admitted to specialized stroke units and registered in the Danish National Indicator Project (DNIP and the Danish National Registry of Patients (NRP between January 2003 and December 2006 (n = 8,024. We retrieved and reviewed medical records from a random sample of patients (n = 589, 7.3%.Results: We found substantial variation in the data quality of stroke-related medical complication diagnoses both within the specific complications and between the registries. The positive predictive values ranged from 39.0%–87.1% in the DNIP, and from 0.0%–92.9% in the NRP. The negative predictive values ranged from 71.6%–98.9% in the DNIP and from 63.3% to 97.4% in the NRP. In both registries the specificity of the diagnoses was high. The sensitivity ranged from 23.5% (95% confidence interval [CI]: 14.9–35.4 for falls to 62.9% (95% CI: 54.9–70.4 for urinary infection in the DNIP, and from 0.0 (95% CI: 0.0–4.99 for falls to 18.1% (95% CI: 2.3–51.8 for pressure ulcer in the NRP.Conclusion: The DNIP may be useful for studying medical complications among patients with stroke.Keywords: stroke, medical complications, data validity, clinical database

  4. Four years of North American registry home parenteral nutrition outcome data and their implications for patient management

    International Nuclear Information System (INIS)

    The OASIS Registry started annual collection of longitudinal data on patients on home parenteral nutrition (HPN) in 1984. This report describes outcome profiles on 1594 HPN patients in seven disease categories. Analysis showed clinical outcome was principally a reflection of the underlying diagnosis. Patients with Crohn's disease, ischemic bowel disease, motility disorders, radiation enteritis, and congenital bowel dysfunction all had a fairly long-term clinical outcome, whereas those with active cancer and acquired immunodeficiency syndrome (AIDS) had a short-term outcome. The long-term group had a 3-year survival rate of 65 to 80%, they averaged 2.6 complications requiring hospitalization per year, and 49% experienced complete rehabilitation. The short-term group had a mean survival of 6 months; they averaged 4.6 complications per year and about 15% experienced complete rehabilitation. The registry data also indicated HPN was used for 19,700 patients in 1987 with therapy growth averaging about 8% per year. This growth was chiefly from new cancer patients. The number of new patients with long-term disorders in whom HPN was initiated appeared rather constant. The authors conclude that these clinical outcome assessments justify HPN for long-term patients, but the utility and appropriateness of HPN for the cancer and AIDS patients remains uncertain and requires further study. Medical, social, and fiscal aspects of HPN management in long-term and short-term patients appear to involve quite separate considerations

  5. Four years of North American registry home parenteral nutrition outcome data and their implications for patient management

    Energy Technology Data Exchange (ETDEWEB)

    Howard, L.; Heaphey, L.; Fleming, C.R.; Lininger, L.; Steiger, E. (Division of Clinical Nutrition, Albany Medical Center, New York (United States))

    1991-07-01

    The OASIS Registry started annual collection of longitudinal data on patients on home parenteral nutrition (HPN) in 1984. This report describes outcome profiles on 1594 HPN patients in seven disease categories. Analysis showed clinical outcome was principally a reflection of the underlying diagnosis. Patients with Crohn's disease, ischemic bowel disease, motility disorders, radiation enteritis, and congenital bowel dysfunction all had a fairly long-term clinical outcome, whereas those with active cancer and acquired immunodeficiency syndrome (AIDS) had a short-term outcome. The long-term group had a 3-year survival rate of 65 to 80%, they averaged 2.6 complications requiring hospitalization per year, and 49% experienced complete rehabilitation. The short-term group had a mean survival of 6 months; they averaged 4.6 complications per year and about 15% experienced complete rehabilitation. The registry data also indicated HPN was used for 19,700 patients in 1987 with therapy growth averaging about 8% per year. This growth was chiefly from new cancer patients. The number of new patients with long-term disorders in whom HPN was initiated appeared rather constant. The authors conclude that these clinical outcome assessments justify HPN for long-term patients, but the utility and appropriateness of HPN for the cancer and AIDS patients remains uncertain and requires further study. Medical, social, and fiscal aspects of HPN management in long-term and short-term patients appear to involve quite separate considerations.

  6. The incidences and mortalities of major cancers in China, 2009

    Institute of Scientific and Technical Information of China (English)

    Wanqing Chen; Rongshou Zheng; Siwei Zhang; Ping Zhao; Guanglin Li; Lingyou Wu; Jie He

    2013-01-01

    In 2012,the National Central Cancer Registry (NCCR) of China collected cancer registration information for the year 2009 from local cancer registries and analyzed it to describe the incidences and mortalities of cancers in China.Based on the data quality criteria from NCCR,data from 104 registries covering 85,470,522 people (57,489,009 in urban areas and 27,981,513 in rural areas) were checked and evaluated.The data from 72 registries were qualified and accepted for the cancer registry annual report in 2012.The total cancer incident cases and cancer deaths were 244,366 and 154,310,respectively.The morphologically verified cases accounted for 67.23% and 3.14% of the incident cases only had information from death certifications.The crude incidence in the Chinese cancer registration areas was 285.91/100,000 (317.97/100,000 in males and 253.09/100,000 in females).The age-standardized rates for incidences based on the Chinese standard population (ASRIC) and the world standard population (ASRIW) were 146.87/100,000 and 191.72/100,000,respectively,with a cumulative incidence of 22.08%.The cancer mortality in the Chinese cancer registration areas was 180.54/100,000 (224.20/100,000 in males and 135.85/100,000 in females).The age-standardized rates for mortalities based on the Chinese standard population (ASRMC) and the world standard population (ASRMW) were 85.06/100,000 and 115.65/100,000,respectively,and the cumulative mortality was 12.94%.Lung cancer,gastric cancer,colorectal cancer,liver cancer,esophageal cancer,pancreatic cancer,encephaloma,lymphoma,female breast cancer,and cervical cancer were the most common cancers,accounting for 75% of all cancer cases.Lung cancer,gastric cancer,liver cancer,esophageal cancer,colorectal cancer,pancreatic cancer,breast cancer,encephaloma,leukemia,and lymphoma accounted for 80% of all cancer deaths.The cancer registration's population coverage has been increasing,and its data quality is improving.As the basis of the

  7. Cancer

    Science.gov (United States)

    ... Blood tests (which look for chemicals such as tumor markers) Bone marrow biopsy (for lymphoma or leukemia) Chest ... the case with skin cancers , as well as cancers of the lung, breast, and colon. If the tumor has spread ...

  8. Cancer

    Science.gov (United States)

    Cancer begins in your cells, which are the building blocks of your body. Normally, your body forms ... be benign or malignant. Benign tumors aren't cancer while malignant ones are. Cells from malignant tumors ...

  9. Hereditary Colorectal Cancer: Registration, Screening and Prognostic Biomarker Analysis

    OpenAIRE

    Barrow, Paul

    2015-01-01

    Aims: The purpose of the research was to investigate the benefits of a hereditary colorectal cancer registry in the management of patients and families with Lynch syndrome. In study one, a systematic review was performed to quantify the impact of registration and screening on colorectal cancer (CRC) incidence and mortality, with comparison between familial adenomatous polyposis (FAP) and Lynch syndrome (LS). In study two, a regional Lynch syndrome registry was utilised to evaluate the uptake ...

  10. Nanotubes Motion on Layered Materials: A Registry Perspective

    CERN Document Server

    Oz, Inbal; Itkin, Yaron; Buchwalter, Asaf; Akulov, Katherine; Hod, Oded

    2015-01-01

    At dry and clean material junctions of rigid materials the corrugation of the sliding energy landscape is dominated by variations of Pauli repulsions. These occur when electron clouds centered around atoms in adjacent layers overlap as they slide across each other. In such cases there exists a direct relation between interfacial surface (in)commensurability and superlubricity, a frictionless and wearless tribological state. The Registry Index is a purely geometrical parameter that quanti?es the degree of interlayer commensurability, thus providing a simple and intuitive method for the prediction of sliding energy landscapes at rigid material interfaces. In the present study, we extend the applicability of the Registry Index to non-parallel surfaces, using a model system of nanotubes motion on ?at hexagonal materials. Our method successfully reproduces sliding energy landscapes of carbon nanotubes on Graphene calculated using a Lennard-Jones type and the Kolmogorov-Crespi interlayer potentials. Furthermore, it...

  11. Registry Evaluation of Digital Ulcers in Systemic Sclerosis

    Directory of Open Access Journals (Sweden)

    Felice Galluccio

    2010-01-01

    Full Text Available Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability.

  12. The German Aortic Valve Registry (GARY): in-hospital outcome

    OpenAIRE

    Hamm, Christian W.; Möllmann, Helge; Holzhey, David; Beckmann, Andreas; Veit, Christof; Figulla, Hans-Reiner; Cremer, J; Kuck, Karl-Heinz; Lange, Rüdiger; Zahn, Ralf; Sack, Stefan; Schuler, Gerhard; Walther, Thomas; Beyersdorf, Friedhelm; Böhm, Michael

    2013-01-01

    Background Aortic stenosis is a frequent valvular disease especially in elderly patients. Catheter-based valve implantation has emerged as a valuable treatment approach for these patients being either at very high risk for conventional surgery or even deemed inoperable. The German Aortic Valve Registry (GARY) provides data on conventional and catheter-based aortic procedures on an all-comers basis. Methods and results A total of 13 860 consecutive patients undergoing repair for aortic valve d...

  13. Results from a multicentre international registry of familial Mediterranean fever

    DEFF Research Database (Denmark)

    Ozen, Seza; Demirkaya, Erkan; Amaryan, Gayane;

    2014-01-01

    BACKGROUND AND AIM: Familial Mediterranean fever (FMF) is an autoinflammatory disease caused by mutations of the MEFV gene. We analyse the impact of ethnic, environmental and genetic factors on the severity of disease presentation in a large international registry. METHODS: Demographic, genetic and...... history. CONCLUSIONS: Eastern Mediterranean FMF patients have a milder disease phenotype once they migrate to Europe, reflecting the effect of environment on the expression of a monogenic disease....

  14. Baseline Characteristics of the Korean Registry of Pulmonary Arterial Hypertension

    OpenAIRE

    Chung, Wook-Jin; Park, Yong Bum; Jeon, Chan Hong; Jung, Jo Won; Ko, Kwang-Phil; Choi, Sung Jae; Seo, Hye Sun; Lee, Jae Seung; Jung, Hae Ok; ,

    2015-01-01

    Despite recent advances in understanding of the pathobiology and targeted treatments of pulmonary arterial hypertension (PAH), epidemiologic data from large populations have been limited to western countries. The aim of the Korean Registry of Pulmonary Arterial Hypertension (KORPAH) was to examine the epidemiology and prognosis of Korean patients with PAH. KORPAH was designed as a nationwide, multicenter, prospective data collection using an internet webserver from September 2008 to December ...

  15. Pleural Mesothelioma Surveillance: Validity of Cases from a Tumour Registry

    Directory of Open Access Journals (Sweden)

    France Labrèche

    2012-01-01

    Full Text Available BACKGROUND: Pleural mesothelioma is a rare tumour associated with exposure to asbestos fibres. Fewer than than one-quarter of cases registered in the Quebec Tumour Registry (QTR have been compensated as work-related. While establishing a surveillance system, this led to questioning as to whether there has been over-registration of cases that are not authentic pleural mesotheliomas in the QTR.

  16. Challenges of the Oral Cancer Burden in India

    OpenAIRE

    Ken Russell Coelho

    2012-01-01

    Oral cancer ranks in the top three of all cancers in India, which accounts for over thirty per cent of all cancers reported in the country and oral cancer control is quickly becoming a global health priority. This paper provides a synopsis of the incidence of oral cancer in India by focusing on its measurement in cancer registries across the country. Based on the International Classification of Disease case definition adopted by the World Health Organisation, and the International Agency for ...

  17. Epidemiology of Gastric Cancer in Northwest Iran: 2003-2011

    OpenAIRE

    Firouz Amani; Mohammad Sadrkabir; Saeid Sadeghieh Ahari; Saeid Barzghari; Abbas Yazdanbod; Ahmad Sabzevari; Moghgan Hadavi

    2015-01-01

    Background: Gastric cancer is the fifth most common cancer in the world and the third leading cause of death from cancer worldwide. This study aims to assess the epidemiology of gastric cancer in Ardabil Province, Iran. Methods: This was a descriptive cross-sectional study performed on 1056 patients with gastric cancer registered in the Ardabil Cancer Registry. Data were collected by a checklist and analyzed by statistical methods in SPSS version 19. Results: Out of 1056 cas...

  18. Risk Factors for Pancreatic Cancer in China: A Multicenter Case-Control Study

    OpenAIRE

    Zhaoxu Zheng

    2016-01-01

    Background: Despite having one of the highest mortality rates of all cancers, the risk factors of pancreatic cancer remain unclear. We assessed risk factors of pancreatic cancer in China. Methods: A case-control study design was conducted using data from four hospital-based cancer registries (Henan Provincial Cancer Hospital, Beijing Cancer Hospital, Hebei Provincial Cancer Hospital, and Cancer Hospital of Chinese Academy of Medical Sciences). Controls were equally matched and selected fro...

  19. The German IVF-Registry – D·I·R

    Directory of Open Access Journals (Sweden)

    Bühler K

    2013-01-01

    Full Text Available Systematic data collection in the field of assisted reproductive techniques is performed in Germany since 30 years. Since 1997, data collection is performed electronically and in a prospective way. In 1998, by a code of the German Medical Association participation at the registry has become mandatory for all IVF centres in Germany. Different software solutions can be used in the centres for data collection. All of them have to cooperate with a special “DIRmod-DLL”, controlling online plausibility and prospectivity of the collected data. More than one million treatment cycles have been reported in the annuals published since 1996 up to 2010. All in all 1.2 millions cycles are included in the registry. Clinical pregnancy rate increased continuously and miscarriage rate decreased. By reduction of the mean number of transferred embryos of about 20% the percentage of born triplets in relationship to all children born after ART decreased of about 80%. It can be shown with the huge number of documented cycles that political decisions exert a dominating influence on treatment and drug choice. The German IVF registry has been established over the last 30 years as an instrument of quality assurance and has experienced highest regard by colleagues and by the international scientific world.

  20. Military Orthopaedic Trauma Registry: Quality Data Now Available.

    Science.gov (United States)

    Rivera, Jessica C; Greer, Renee M; Wenke, Joseph C; Ficke, James R; Johnson, Anthony E

    2016-01-01

    The Military Orthopaedic Trauma Registry (MOTR) orginally began as part of the Department of Defense Trauma Registry (DoDTR) and became a live registry in 2013. As a quality improvement process, this study examined MOTR data for 20 female amputees compared with DoDTR data. The DoDTR provided diagnosis and procedure codes as a list but no details. The MOTR provided additional data, including specific limb, fracture classifications, and associated injuries per limb. The MOTR allowed for construction of a treatment time line for each limb, including number and timing of debridements, antibiotics, and implant types. Orthopaedic-specific complications were also coded more frequently in the MOTR and clearly identified with a specific injury and treatment. During initial quality control checks, the MOTR provides a greater volume and granularity of detail for orthopaedic-specific injury and treatment information, indicating that the MOTR is on track to provide a valuable repository for data-driven orthopaedic management of combat injury. PMID:27518292

  1. [Cancer].

    Science.gov (United States)

    de la Peña-López, Roberto; Remolina-Bonilla, Yuly Andrea

    2016-09-01

    Cancer is a group of diseases which represents a significant public health problem in Mexico and worldwide. In Mexico neoplasms are the second leading cause of death. An increased morbidity and mortality are expected in the next decades. Several preventable risk factors for cancer development have been identified, the most relevant including tobacco use, which accounts for 30% of the cancer cases; and obesity, associated to another 30%. These factors, in turn, are related to sedentarism, alcohol abuse and imbalanced diets. Some agents are well knokn to cause cancer such as ionizing radiation, viruses such as the papilloma virus (HPV) and hepatitis virus (B and C), and more recently environmental pollution exposure and red meat consumption have been pointed out as carcinogens by the International Agency for Research in Cancer (IARC). The scientific evidence currently available is insufficient to consider milk either as a risk factor or protective factor against different types of cancer. PMID:27603890

  2. Air pollution from traffic and risk for lung cancer in three Danish cohorts

    DEFF Research Database (Denmark)

    Raaschou-Nielsen, Ole; Bak, Helle; Sørensen, Mette; Jensen, Steen Solvang; Ketzel, Matthias; Hvidberg, Martin; Schnohr, Peter; Tjønneland, Anne; Overvad, Kim; Loft, Steffen

    2010-01-01

    in the Danish Cancer Registry from the members of three prospective cohorts and selected a comparison group of 3,481 persons from the same cohorts in a case-cohort design. Residential addresses from January 1, 1971, were traced in the Central Population Registry. The NOx concentration at each address...

  3. Nationwide quality improvement in lung cancer care

    DEFF Research Database (Denmark)

    Jakobsen, Erik Winther; Green, Anders; Oesterlind, Kell;

    2013-01-01

    To improve prognosis and quality of lung cancer care the Danish Lung Cancer Group has developed a strategy consisting of national clinical guidelines and a clinical quality and research database. The first edition of our guidelines was published in 1998 and our national lung cancer registry was...... opened for registrations in 2000. This article describes methods and results obtained by multidisciplinary collaboration and illustrates how quality of lung cancer care can be improved by establishing and monitoring result and process indicators....

  4. Cancer incidence in Italian contaminated sites

    OpenAIRE

    Pietro Comba; Paolo Ricci; Ivano Iavarone; Roberta Pirastu; Carlotta Buzzoni; Mario Fusco; Stefano Ferretti; Lucia Fazzo; Roberto Pasetto; Amerigo Zona; Emanuele Crocetti

    2014-01-01

    INTRODUCTION. The incidence of cancer among residents in sites contaminated by pollutants with a possible health impact is not adequately studied. In Italy, SENTIERI Project (Epidemiological study of residents in National Priority Contaminated Sites, NPCSs) was implemented to study major health outcomes for residents in 44 NPCSs. METHODS. The Italian Association of Cancer Registries (AIRTUM) records cancer incidence in 23 NPCSs. For each NPCSs, the incidence of all malignant cancers combined ...

  5. Cancer Incidence and Mortality in China, 2007

    Institute of Scientific and Technical Information of China (English)

    Wan-qing Chen; Hong-mei Zeng; Rong-shou Zheng; Si-wei Zhang; Jie He

    2012-01-01

    Objective:Cancer incidence and mortality data collected from population-based cancer registries were analyzed to present the overall cancer statistics in Chinese registration areas by age,sex and geographic area in 2007.Methods:In 2010,48 cancer registries reported cancer incidence and mortality data of 2007 to National Central Cancer Registry of China.Of them,38 registries' data met the national criteria.Incidence and mortality were calculated by cancer sites,age,gender,and area.Age-standardized rates were described by China and World population.Results:The crude incidence rate for all cancers was 276.16/100,000 (305.22/100,000 for male and 246.46/100,000 for female; 284.71/100,000 in urban and 251.07/100,000 in rural).Age-standardized incidence rates by China and World population were 145.39/100,000 and 189.46/100,000 respectively.The crude mortality rate for all cancers was 177.09/100,000 (219.15/100,000 for male and 134.10/100,000 for female; 173.55/100,000 in urban and 187.49/100,000 in rural).Age-standardized mortality rates by China and World population were 86.06/100,000 and 116.46/100,000,respectively.The top 10 most frequently common cancer sites were the lung,stomach,colon and rectum,liver,breast,esophagus,pancreas,bladder,brain and lymphoma,accounting for 76.12% of the total cancer cases.The top 10 causes of cancer death were cancers of the lung,liver,stomach,esophagus,colon and rectum,pancreas,breast,leukemia,brain and lymphoma,accounting for 84.37% of the total cancer deaths.Conclusion:Cancer remains a major disease threatening people's health in China.Prevention and control should be enhanced,especially for the main cancers.

  6. Types of Cancer Associated with Transplant Recipients

    Science.gov (United States)

    ... cancer can be transmitted through deceased and living donor organ, cell and tissue transplantation. Treatment of donor related ... 2000. First Report of the United Network for Organ Sharing Transplant Tumor Registry: Donors with a History of Cancer. Transplantation 80:883- ...

  7. [Cancer incidence and mortality in some health districts in Brescia area 1993--1995].

    Science.gov (United States)

    Simonati, C; Limina, R M; Gelatti, U; Indelicato, A; Scarcella, C; Donato, F; Nardi, G

    2004-01-01

    Cancer Registries are an essential part of any rational programme of cancer control, for assessing the impact of cancer in the community, for health care planning and monitoring screening programmes, according to local enviromental problems. The Brescia Cancer Registry started in 1994 producing prevalence, incidence and mortality data using only manual procedures of colletting and processing data from clinical and pathological sources in Brescia in 1993--1995. Data quality indicators such as the percentages of istologically or cytologically verified cases and that of cases registered on the basis of Death Certificate Only (DCO) are similar to those from the other Northern Italian Registries. Incidence rates for all causes and for various common sites are higher in Brescia than in other areas covered by Cancer Registries in North of Italy. PMID:15697007

  8. Breast cancer survival and stage at diagnosis in Australia, Canada, Denmark, Norway, Sweden and the UK, 2000-2007: a population-based study

    OpenAIRE

    Walters, S.; Maringe, C; Butler, J.; Rachet, B; Barrett-Lee, P; Bergh, J; Boyages, J.; P. Christiansen; Lee, M.; Wärnberg, F; Allemani, C; Engholm, G; Fornander, T.; Gjerstorff, M L; Johannesen, T. B.

    2013-01-01

    Background: We investigate whether differences in breast cancer survival in six high-income countries can be explained by differences in stage at diagnosis using routine data from population-based cancer registries. Methods: We analysed the data on 257 362 women diagnosed with breast cancer during 2000–7 and registered in 13 population-based cancer registries in Australia, Canada, Denmark, Norway, Sweden and the UK. Flexible parametric hazard models were used to estimate net survival and the ...

  9. Socioeconomic disparities in breast cancer incidence and survival among parous women: findings from a population-based cohort, 1964–2008

    OpenAIRE

    Goldberg, Mandy; Calderon-Margalit, Ronit; Paltiel, Ora; Abu Ahmad, Wiessam; Friedlander, Yechiel; Harlap, Susan; Manor, Orly

    2015-01-01

    Background Socioeconomic position (SEP) has been associated with breast cancer incidence and survival. We examined the associations between two socioeconomic indicators and long-term breast cancer incidence and survival in a population-based cohort of parous women. Methods Residents of Jerusalem who gave birth between 1964–1976 (n = 40,586) were linked to the Israel Cancer Registry and Israel Population Registry to determine breast cancer incidence and vital status through mid-2008. SEP was a...

  10. Tumors that Mimic Asbestos-Related Mesothelioma: Time to Consider a Genetics-Based Tumor Registry?

    Directory of Open Access Journals (Sweden)

    Brent Daniel Kerger

    2014-05-01

    Full Text Available The diagnosis of mesothelioma is not always straightforward, despite known immunohistochemical markers and other diagnostic techniques. One reason for the difficulty is that extrapleural tumors resembling mesothelioma may have several possible etiologies, especially in cases with no meaningful history of amphibole asbestos exposure. When the diagnosis of mesothelioma is based on histologic features alone, primary mesotheliomas may resemble various primary or metastatic cancers that have directly invaded the serosal membranes. Some of these metastatic malignancies, particularly carcinomas and sarcomas of the pleura, pericardium and peritoneum, may undergo desmoplastic reaction in the pleura, thereby mimicking mesothelioma, rather than the primary tumor. Encasement of the lung by direct spread or metastasis, termed pseudomesotheliomatous spread, occurs with several other primary cancer types, including certain late-stage tumors from genetic cancer syndromes exhibiting chromosomal instability. Although immunohistochemical staining patterns differentiate most carcinomas, lymphomas, and mestastatic sarcomas from mesotheliomas, specific genetic markers in tumor or somatic tissues have been recently identified that may also distinguish these tumor types from asbestos-related mesothelioma. A registry for genetic screening of mesothelioma cases would help lead to improvements in diagnostic criteria, prognostic accuracy and treatment efficacy, as well as improved estimates of primary mesothelioma incidence and of background rates of cancers unrelated to asbestos that might be otherwise mistaken for mesothelioma. This information would also help better define the dose-response relationships for mesothelioma and asbestos exposure, as well as other risk factors for mesothelioma and other mesenchymal or advanced metastatic tumors that may be indistinguishable by histology and staining characteristics.

  11. Quality control and assurance in hematopoietic stem cell transplantation data registries in Japan and other countries.

    Science.gov (United States)

    Kuwatsuka, Yachiyo

    2016-01-01

    Observational studies from national and international registries with large volumes of patients are commonly performed to identify superior strategies for hematopoietic stem cell transplantation. Major international and national stem cell transplant registries collect outcome data using electronic data capture systems, and a systematic study support process has been developed. Statistical support for studies is available from some major international registries, and international and national registries also mutually collaborate to promote stem cell transplant outcome studies and transplant-related activities. Transplant registries additionally take measures to improve data quality to further improve the quality of outcome studies by utilizing data capture systems and manual data management. Data auditing can potentially even further improve data quality; however, human and budgetary resources can be limiting factors in system construction and audits of the Japanese transplant registry are not currently performed. PMID:26563189

  12. Establishment and use of national registries for actinide elements in humans

    International Nuclear Information System (INIS)

    This TECDOC covers all aspects of the establishment and use of registries for actinide elements in Member States. These aspects include assessing the need for such registries; defining scope of the work and developing objectives; administration; organization and staffing; policies; practices; procedures; protocols; registration and enrollment; data collection and evaluation; establishing and analytical laboratory; publication of results and application of findings. Not all aspects will be relevant to all Member States establishing such registries. 1 tab

  13. A most convenient flag : the development of the Singapore ship registry, 1969-82

    OpenAIRE

    Tenold, Stig

    2000-01-01

    The aim of this report is to trace the development of the Singapore Ship Registry, from the introduction of open registry in 1969 until the tightening of registration requirements from the late 1970s. The extraordinary growth of the Singapore merchant marine is analysed in the light of the policies of the Singapore government. In many respects, the opening of the registry mirrors the Singapore economic policies in general, as it facilitated the growth of domestic employment and production, wi...

  14. Pelvic Floor Disorders Registry: Study Design and Outcome Measures.

    Science.gov (United States)

    Weber LeBrun, Emily; Adam, Rony A; Barber, Matthew D; Boyles, Sarah Hamilton; Iglesia, Cheryl B; Lukacz, Emily S; Moalli, Pamela; Moen, Michael D; Richter, Holly E; Subak, Leslee L; Sung, Vivian W; Visco, Anthony G; Bradley, Catherine S

    2016-01-01

    Pelvic floor disorders affect up to 24% of adult women in the United States, and many patients with pelvic organ prolapse (POP) choose to undergo surgical repair to improve their quality of life. While a variety of surgical repair approaches and techniques are utilized, including mesh augmentation, there is limited comparative effectiveness and safety outcome data guiding best practice. In conjunction with device manufacturers, federal regulatory organizations, and professional societies, the American Urogynecologic Society developed the Pelvic Floor Disorders Registry (PFDR) designed to improve the quality of POP surgery by facilitating quality improvement and research on POP treatments. The PFDR will serve as a resource for surgeons interested in benchmarking and outcomes data and as a data repository for Food and Drug Administration-mandated POP surgical device studies. Provider-reported clinical data and patient-reported outcomes will be collected prospectively at baseline and for up to 3 years after treatment. All data elements including measures of success, adverse events, and surgeon characteristics were identified and defined within the context of the anticipated multifunctionality of the registry, and with collaboration from multiple stakeholders. The PFDR will provide a platform to collect high-quality, standardized patient-level data from a variety of nonsurgical (pessary) and surgical treatments of POP and other pelvic floor disorders. Data from this registry may be used to evaluate short- and longer-term treatment outcomes, patient-reported outcomes, and complications, as well as to identify factors associated with treatment success and failure with the overall goal of improving the quality of care for women with these conditions. PMID:26825404

  15. The Pelvic Floor Disorders Registry: Purpose and Development.

    Science.gov (United States)

    Bradley, Catherine S; Visco, Anthony G; Weber LeBrun, Emily E; Barber, Matthew D

    2016-01-01

    Pelvic organ prolapse (POP) is a common problem that negatively impacts women's quality of life. A variety of surgeries exist for POP treatment, including procedures performed with and without mesh augmentation. The growing use of mesh in prolapse surgeries in the 2000s was associated with increasing reports of complications, resulting in Food and Drug Administration (FDA) Safety Notifications, and in 2012, the FDA ordered transvaginal mesh manufacturers to conduct prospective studies to evaluate longer-term outcomes. These requirements provided incentives and an environment conducive to collaboration. American Urogynecologic Society leaders collaborated with device manufacturers, the FDA, and other professional organizations to establish the Pelvic Floor Disorders Registry (PFDR), a collection of interrelated registries, which could meet manufacturers' needs but also allow surgeons to track individual and aggregate outcomes for quality improvement. The PFDR was developed and launched by American Urogynecologic Society with objectives of (1) collecting, storing, and analyzing clinical data related to POP treatment; (2) establishing common data elements and quality metrics; and (3) providing a framework for external stakeholders to conduct POP research. The PFDR includes industry-sponsored studies, as well as 2 options for volunteer registry participation, the PFDR-Quality Improvement and PFDR-Research. The PFDR promotes quality improvement and national benchmarking and will provide real-world comparative safety and effectiveness data for prolapse surgeries. The PFDR can serve as a model for collaboration between medical practitioners, researchers, industry, and federal agencies and may allow progress toward our similar goal of high-quality surgical care of women with prolapse. PMID:26829344

  16. Commensurate Registry and Chemisorption at a Hetero-organic Interface

    Science.gov (United States)

    Stadtmüller, Benjamin; Sueyoshi, Tomoki; Kichin, Georgy; Kröger, Ingo; Soubatch, Sergey; Temirov, Ruslan; Tautz, F. Stefan; Kumpf, Christian

    2012-03-01

    We present evidence for a partly chemisorptive bonding between single monolayers of copper-II-phthalocyanine (CuPc) and 3,4,9,10-perylene-tetracarboxylic-dianhydride (PTCDA) that are stacked on Ag(111). A commensurate registry between the two molecular layers and the substrate, i.e., a common crystallographic lattice for CuPc and PTCDA films as well as for the Ag(111) surface, indicates that the growth of the upper layer is dominated by the structure of the lower. Photoemission spectroscopy clearly reveals a gradual filling of the lowest unoccupied molecular orbital of PTCDA due to CuPc adsorption, which proves the chemisorptive character.

  17. Commensurate registry and chemisorptions at a hetero-organic interface

    OpenAIRE

    Stadtmüller, B; Sueyoshi, T; Kichin, G.; Kröger, I.; Soubatch, S.; Temirov, R.; Tautz, F. S.; Kumpf, C.

    2012-01-01

    We present evidence for a partly chemisorptive bonding between single monolayers of copper-II-phthalocyanine (CuPc) and 3,4,9,10-perylene-tetracarboxylic-dianhydride (PTCDA) that are stacked on Ag(111). A commensurate registry between the two molecular layers and the substrate, i.e., a common crystallographic lattice for CuPc and PTCDA films as well as for the Ag(111) surface, indicates that the growth of the upper layer is dominated by the structure of the lower. Photoemission spectroscopy c...

  18. Cyclists' injury epidemiology based on a road trauma registry

    OpenAIRE

    Amoros, E.; Chiron, M; Thelot, B; Ndiaye, A.; Laumon, B.

    2010-01-01

    Cycling is increasing in some cities. Bicycle injuries are often overlooked, partly because police crash data largely under-report them. Method: A road trauma registry in a French area (Rhône county, population=1.6 Million) includes both in- and out-patients, with injuries coded with the Abbreviated Injury Scale (AIS). Over 1996- 2006, 14437 people were recorded as injured (or killed) while cycling. Type of cyclists is approximately defined by crash location and age: in or out of town, or chi...

  19. The Medical Birth Registry of Norway – An international perspective

    OpenAIRE

    Wilcox, Allen J.

    2007-01-01

    Some of the most practical questions of perinatal medicine are regarding couples who have had pregnancy problems in the past, and their risk of having such problems in future pregnancies. For example, if a couple has a child with a birth defect, what are their chances that their next child will have a defect? The key to answering such questions is the availability of linked data such as those provided by the Medical Birth Registry of Norway. Such linked data provide a unique resource for addr...

  20. Establishing a Twin Registry in Guinea-Bissau

    DEFF Research Database (Denmark)

    Bjerregaard-Andersen, Morten; Gomes, Margarida A; Joaquím, Luis C;

    2013-01-01

    recently established one of the first twin registries in Sub-Saharan Africa. Our short-term aim is to describe twin mortality and morbidity in order to design appropriate health interventions. Our long-term goal is a large-scale database to explore the pathogenesis of prevalent diseases; for example......, diabetes mellitus, metabolic syndrome, and infectious diseases such as HIV, tuberculosis, and malaria. A major focus area is also the etiology of low birth weight and how epigenetic processes might modulate the consequences of low birth weight in Sub-Saharan Africa. For this, monozygotic twin studies...

  1. Cancer in the Republic of Palau (Belau).

    Science.gov (United States)

    Wong, Vanessa; Taoka, Sharyl; Kuartei, Stevenson; Demei, Yorah; Soaladaob, Francisca

    2004-09-01

    This study, funded by the National Cancer Institute, assessed cancer awareness and service needs in the Republic of Belau (Belau) in April 2003. Cancer prevention and control is a concern for Belau, and this country maintains a cancer registry to track cases and outcomes. However, assistance is needed to strengthen and expand existing cancer-related services. Key informants requested help to develop a comprehensive cancer prevention and control program, increase the capacity of professional staff in diagnosing and treating cancer, and improve laboratory and pathology services. PMID:16281680

  2. Fear Arousing Persuasive Communication: The Use of Threat and Coping Appraisal in Breast Cancer Messages

    OpenAIRE

    Karuoya Simon Njoroge; Helen Mberia

    2014-01-01

    At present, breast cancer is having a severe effect in Kenya and it forms a serious threat to Kenyan women. In Kenya, breast cancer is the most common reproductive organ cancer which contributed 23% of all female cancers with one out of every nine women being diagnosed with advanced breast cancer (Neondo, 2006). According to the regional cancer registry at Kenya Medical Research Institute, about 80% of reported cases of cancer in Kenya are diagnosed at advanced stages, when very little can be...

  3. Prevalence of pathogenic mutations in cancer predisposition genes among pancreatic cancer patients

    OpenAIRE

    Hu, Chunling; Steven N Hart; William R Bamlet; Moore, Raymond M.; Nandakumar, Kannabiran; Bruce W Eckloff; Lee, Yean K.; Petersen, Gloria M.; Robert R McWilliams; Couch, Fergus J.

    2015-01-01

    The prevalence of germline pathogenic mutations in a comprehensive panel of cancer predisposition genes is not well defined for patients with pancreatic ductal adenocarcinoma (PDAC). To estimate the frequency of mutations in a panel of 22 cancer predisposition genes, 96 patients unselected for a family history of cancer who were recruited to the Mayo Clinic Pancreatic Cancer patient registry over a 12 month period were screened by next-generation sequencing. Fourteen pathogenic mutations in 1...

  4. Early stage cervical cancer : quality of cancer care and quality of life

    NARCIS (Netherlands)

    Pieterse, Quirine Dionne

    2007-01-01

    To improve quality of cancer care treatment-related information is needed. This could be acquired by registries. Since January 1984, the Leiden University Medical Center (LUMC) collects prospectively more than 200 relevant clinical and pathological parameters of women with cervical cancer treated in

  5. Trends of Thyroid Cancer in Israel: 1980–2012

    OpenAIRE

    Lital Keinan-Boker; Silverman, Barbara G.

    2016-01-01

    Objectives: Thyroid cancer incidence is increasing worldwide, while mortality from thyroid cancer is stable or decreasing. Consequently, survival rates are rising. We describe time trends in the incidence, mortality, and 5-year survival of thyroid cancer in Israel in 1980–2012, in light of the global trends. Methods: Israel National Cancer Registry database provided information regarding thyroid cancer incidence and vital status, which enabled computation of survival rates. The Central Bu...

  6. Risk of Cancer Following Hospitalization for Type 2 Diabetes

    OpenAIRE

    Hemminki, Kari; Li, Xinjun; Sundquist, Jan; Sundquist, Kristina

    2010-01-01

    Objectives. Cancer and type 2 diabetes (T2D) are two common diseases that may share risk factors. We aimed at determining subsequent cancer risks in patients hospitalized for T2D in Sweden. Methods. T2D patients were obtained from the nationwide Hospital Discharge Register; cancers were recorded from the Swedish Cancer Registry. Standardized incidence ratios (SIRs) were calculated for cancer following last hospitalization for T2D. The comparison group was the general Swedish population. Resul...

  7. Animal tumour registry of two provinces in northern Italy: incidence of spontaneous tumours in dogs and cats

    Directory of Open Access Journals (Sweden)

    Carminato Antonio

    2009-10-01

    Full Text Available Abstract Background Cancer is a major cause of death in domestic animals. Furthermore, many forms of pet neoplasm resemble that of their human counterparts in biologic behaviour, pathologic expression, and recognised risk factors. In April 2005, a pilot project was activated so as to establish a dog and cat tumour registry living in the Venice and Vicenza provinces (Veneto Region, north-eastern Italy, with the aim of estimating the incidence of spontaneous tumours. Results Through a telephone survey, the estimates of canine and feline populations of the catchment area turned out to be of 296,318 (CI +/- 30,201 and 214,683 (CI +/- 21,755 subjects, respectively. During the first three years, overall 2,509 canine and 494 feline cases of neoplasia were diagnosed. In dogs, the estimated annual incidence rate (IR per 100,000 dogs for all tumours was 282 in all the catchment area, whereas in cats the IR was much lower (IR = 77. Malignant and benign tumours were equally distributed in male and female dogs, whereas cats had a 4.6-fold higher incidence of malignant tumours than benign. In both dogs and cats, purebreds had an almost 2-fold higher incidence of malignant tumours than mixed breeds. Tumour incidence increased with age in both dog and cat populations. Conclusion This study has provided estimates of incidence of spontaneous neoplasm in companion animals. Further attempts will be made to increase the accuracy in the population size assessment and to ascertain the real gap with the official regional canine demographic registry. Veterinary practitioners may also benefit from the tumour registry insofar they may obtain data for specific breeds, age groups or geographical areas.

  8. Database structure for the Laser Accident and Incident Registry (LAIR)

    Science.gov (United States)

    Ness, James W.; Hoxie, Stephen W.; Zwick, Harry; Stuck, Bruce E.; Lund, David J.; Schmeisser, Elmar T.

    1997-05-01

    The ubiquity of laser radiation in military, medical, entertainment, telecommunications and research industries and the significant risk, of eye injury from this radiation are firmly established. While important advances have been made in understanding laser bioeffects using animal analogues and clinical data, the relationships among patient characteristics, exposure conditions, severity of the resulting injury, and visual function are fragmented, complex and varied. Although accident cases are minimized through laser safety regulations and control procedures, accumulated accident case information by the laser eye injury evaluation center warranted the development of a laser accident and incident registry. The registry includes clinical data for validating and refining hypotheses on injury and recovery mechanisms; a means for analyzing mechanisms unique to human injury; and a means for identifying future areas of investigation. The relational database supports three major sections: (1) the physics section defines exposure circumstances, (2) the clinical/ophthalmologic section includes fundus and scanning laser ophthalmoscope images, and (3) the visual functions section contains specialized visual function exam results. Tools are available for subject-matter experts to estimate parameters like total intraocular energy, ophthalmic lesion grade, and exposure probability. The database is research oriented to provide a means for generating empirical relationships to identify symptoms for definitive diagnosis and treatment of laser induced eye injuries.

  9. First annual report of the Austrian CML registry.

    Science.gov (United States)

    Schmidt, Stefan; Wolf, Dominik; Thaler, Josef; Burgstaller, Sonja; Linkesch, Wolfgang; Petzer, Andreas; Fridrik, Michael; Lang, Alois; Agis, Hermine; Valent, Peter; Krieger, Otto; Walder, Alois; Korger, Markus; Schlögl, Ernst; Sliwa, Tamer; Wöll, Ernst; Mitterer, Manfred; Eisterer, Wolfgang; Pober, Michael; Gastl, Günther

    2010-10-01

    The Austrian chronic myeloid leukemia (CML) registry monitors individual disease courses, treatments applied, clinical outcome, and side effects of CML patients on a nationwide basis to provide data on the "real-life" situation and to complement the information and interpretation gained from the selected patient population observed in clinical trials. This report summarizes the Austrian CML registry data as of March 2009. A total of 179 patients have been registered with a median number of 1012 follow-up visits and median observation duration of 20 months. At diagnosis most patients (n = 163) were in chronic phase (early, late, and secondary), whereas only 4 were in advanced phase. A total of 137 patients were treated with tyrosine kinase inhibitors (TKIs), of which 14 received first and second generation TKIs sequentially. Other treatment modalities included chemotherapy or interferon and stem cell transplantation (SCT). Cumulative incidence rates for complete hematological responses (CHR) were 91.6% and 94.4% at 12 and 24 months, respectively, compared to cumulative incidence rates of complete cytogenetical response rates of 64% and 80% at these timepoints. A total of 5 patients progressed from chronic phase to accelerated (n = 3) and blastic phase (n = 2) while receiving imatinib standard dose. Estimated overall survival (OS) rate at 60 months was 90% and progression free survival (PFS) according to European Leukemia Net (ELN) failure definition was 58%. PMID:20936366

  10. The magnitude of cancer breast in India: a summary.

    Science.gov (United States)

    Nandakumar, A; Ramnath, T; Chaturvedi, Meesha

    2010-01-01

    Cancer of breast has emerged as the leading site of cancer in most urban populations of India. For the year 2007, there have been an estimated 82,000 new cases of cancer Breast in India. It is rapidly replacing cancer of cervix as the most important leading site of cancer among women. The data collected over the years from five urban population based cancer registries namely Bangalore, Bhopal, Chennai, Delhi and Mumbai, under the network of National Cancer Registry Programme (NCRP) have shown a statistical rising trend in the incidence rate of breast cancer. In hospital-based cancer registries, cancer of the breast is the leading site of cancer in Mumbai and Thiruvananthapuram, second leading site in Bangalore, Dibrugarh and Chennai. Cancer of breast constitutes 14.3 to 30.0% of all cancers in women in these HBCRs. The report on 'Development of an Atlas of Cancer in India' showed that Chandigarh (39.5), North Goa (36.8), Aizawl (36.2) and Panchkula (34.6) had the higher microscopic incidence rates of breast cancer compared to that seen in Delhi PBCR that had the highest rate among all PBCRs. PMID:22930611

  11. Twenty years of the Italian Fanconi Anemia Registry: where we stand and what remains to be learned.

    Science.gov (United States)

    Risitano, Antonio M; Marotta, Serena; Calzone, Rita; Grimaldi, Francesco; Zatterale, Adriana

    2016-03-01

    The natural history of Fanconi anemia remains hard to establish because of its rarity and its heterogeneous clinical presentation; since 1994, the Italian Fanconi Anemia Registry has collected clinical, epidemiological and genetic data of Italian Fanconi Anemia patients. This registry includes 180 patients with a confirmed diagnosis of Fanconi anemia who have either been enrolled prospectively, at diagnosis, or later on. After enrollment, follow-up data were periodically collected to assess the clinical course, possible complications and long-term survival; the median follow up was 15.6 years. The main goal of the study was to describe the natural history of Fanconi anemia, focusing on the following variables: family history, disease presentation, development of hematological manifestations, development of malignancies, occurrence of hematopoietic stem cell transplantation and survival. Typical morphological and/or hematological abnormalities and/or growth retardation were the most common manifestations at diagnosis; the majority of patients (77%) exhibited hematological abnormalities at the initial presentation, and almost all (96%) eventually developed hematological manifestations. More than half of the patients (57%) underwent a bone-marrow transplant. The occurrence of cancer was quite rare at diagnosis, whereas the cumulative incidence of malignancies at 10, 20 and 30 years was 5%, 8% and 22%, respectively, for hematological cancers and 1%, 15% and 32%, respectively, for solid tumors. Overall survival at 10, 20 and 30 years were 88%, 56% and 37%, respectively; the main causes of death were cancer, complications of the hematological presentation and complications of transplantation. These data clearly confirm the detrimental outcome of Fanconi anemia, with no major improvement in the past decades. PMID:26635036

  12. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Science.gov (United States)

    2010-07-01

    ... 36 Parks, Forests, and Public Property 3 2010-07-01 2010-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  13. Treatment of autoinflammatory diseases: results from the Eurofever Registry and a literature review

    NARCIS (Netherlands)

    Haar, N. Ter; Lachmann, H.; Ozen, S.; Woo, P.; Uziel, Y.; Modesto, C.; Kone-Paut, I.; Cantarini, L.; Insalaco, A.; Neven, B.; Hofer, M.; Rigante, D.; Al-Mayouf, S.; Touitou, I.; Gallizzi, R.; Papadopoulou-Alataki, E.; Martino, S.; Kuemmerle-Deschner, J.; Obici, L.; Iagaru, N.; Simon, A.; Nielsen, S.; Martini, A.; Ruperto, N.; Gattorno, M.; Frenkel, J.

    2013-01-01

    OBJECTIVE: To evaluate the response to treatment of autoinflammatory diseases from an international registry and an up-to-date literature review. METHODS: The response to treatment was studied in a web-based registry in which clinical information on anonymised patients with autoinflammatory diseases

  14. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries.

    Science.gov (United States)

    Codreanu, Catalin; Damjanov, Nemanja

    2015-01-01

    Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA). Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs) and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols) often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs) and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]). The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. PMID:25670881

  15. The Danish Registry on Regular Dialysis and Transplantation: completeness and validity of incident patient registration

    DEFF Research Database (Denmark)

    Hommel, Kristine; Rasmussen, Søren; Madsen, Mette;

    2010-01-01

    The Danish National Registry on Regular Dialysis and Transplantation (NRDT) provides systematic information on the epidemiology and treatment of end-stage chronic kidney disease in Denmark. It is therefore of major importance that the registry is valid and complete. The aim of the present study...

  16. Validation of epithelial ovarian cancer and fallopian tube cancer and ovarian borderline tumor data in the Danish Gynecological Cancer Database

    DEFF Research Database (Denmark)

    Petri, Anette Lykke; Kjaer, Susanne Krüger; Christensen, Ib J;

    2009-01-01

    OBJECTIVE: To validate the data on epithelial ovarian cancer, fallopian tube cancer and borderline ovarian tumors registered in the nationwide Danish Gynecological Cancer Database (DGCD) in 2005 and 2006. The DGCD is a multidisciplinary database that contains data for research and quality...... improvement. DESIGN: Comparative registry-based study supplemented with data from medical records. SETTING: Six hospitals in Denmark. PARTICIPANTS: Women registered with epithelial ovarian cancer, fallopian tube cancer and borderline ovarian tumor. MAIN OUTCOME MEASURE: Data completeness and strength of...... validity of ovarian cancer data in the DGCD is sufficient for quality monitoring in gynecological oncology....

  17. Validation of epithelial ovarian cancer and fallopian tube cancer and ovarian borderline tumor data in the Danish Gynecological Cancer Database

    DEFF Research Database (Denmark)

    Petri, A.L.; Kjaer, S.K.; Christensen, I.J.;

    2009-01-01

    OBJECTIVE: To validate the data on epithelial ovarian cancer, fallopian tube cancer and borderline ovarian tumors registered in the nationwide Danish Gynecological Cancer Database (DGCD) in 2005 and 2006. The DGCD is a multidisciplinary database that contains data for research and quality...... improvement. DESIGN: Comparative registry-based study supplemented with data from medical records. SETTING: Six hospitals in Denmark. PARTICIPANTS: Women registered with epithelial ovarian cancer, fallopian tube cancer and borderline ovarian tumor. MAIN OUTCOME MEASURE: Data completeness and strength of...... validity of ovarian cancer data in the DGCD is sufficient for quality monitoring in gynecological oncology Udgivelsesdato: 2009...

  18. Establishing a National Medical Device Registry in Saudi Arabia: Lessons Learned and Future Work.

    Science.gov (United States)

    Al-Surimi, Khaled; Househ, Mowafa; Almohandis, Essam; Alshagathrh, Fahd

    2015-01-01

    Medical device evaluation presents several unique challenges due to the great diversity and complexity of medical devices and their rapid technological evolution. There has been a variety of work conducted on the development of disease based registries and health surveillance systems in Saudi Arabia. However, the progress of medical device registry systems and post-market medical device surveillance systems remains in its infancy in Saudi Arabia and within the region. In 2007, a royal decree assigned the responsibility for regulating medical devices to the Saudi Food and Drug Authority (SFDA). Soon afterwards, the SFDA established the Medical Devices National Registry (MDNR) to house medical device information relating to manufacturers, agents, suppliers and end-users. The aim of this paper is to provide an overview on the Medical Device National Registry (MDNR) in Saudi Arabia and describe the current experience and future work of establishing a comprehensive medical device registry and post-market surveillance system in Saudi Arabia. PMID:26152943

  19. Incidence of cancer among Norwegian boiler welders.

    OpenAIRE

    Danielsen, T E; Langård, S; Andersen, A.

    1996-01-01

    OBJECTIVES: The cancer incidence among 2957 boiler welders was investigated. The subjects were registered electrical welders from 1942 to 1981. A subcohort of 606 stainless steel welders was studied separately. METHODS: The investigation was a historical prospective cohort study based on a national registry. The loss of follow up was 4.9%. RESULTS: There were 625 deaths (659 expected). There were 269 cancer cases (264 expected). An excess of lung cancer was found; 50 cases v 37.5 expected. Th...

  20. Occupational risks of sinonasal cancer in Denmark.

    OpenAIRE

    Olsen, J H

    1988-01-01

    A new comprehensive data linkage system for the detailed investigation of occupational cancer has been established in the Danish Cancer Registry, providing employment histories back to 1964. All 382 cases of cancers of the sinonasal cavities diagnosed between 1970 and 1984 and kept on file in this data linkage system were analysed using standardised proportional incidence ratios (SPIR) to screen for industrial high risk areas for these malignancies in Denmark. Excess risks were confirmed amon...

  1. [Epidemiological cancer data online: an overview of information service in Germany and Europe].

    Science.gov (United States)

    Schönfeld, I; Kraywinkel, K

    2014-01-01

    Finding reliable data about cancer epidemiology on the World Wide Web is not an easy task. Information is often scattered, and sources are not always clear. This article gives a short overview of the most important websites that provide reliable data for Germany and Europe. Four internet sites are presented: The German Centre for Cancer Registry Data (ZfKD), the Association of Population-Based Cancer Registries in Germany (GEKID), and two different websites created by the International Agency for Research on Cancer (IARC). In combination, they provide comprehensive information about the distribution of cancer in Germany and Europe. PMID:24357168

  2. Electronic immunization registries in Latin America: progress and lessons learned.

    Science.gov (United States)

    Danovaro-Holliday, M Carolina; Ortiz, Claudia; Cochi, Shea; Ruiz-Matus, Cuauhtémoc

    2014-01-01

    Most of the current vaccination coverage monitoring in Latin America relies on aggregated data. Improved monitoring has been shown to result in better coverage. Taking advantage of current information and communication technologies, the use of electronic immunization registries (EIRs) can facilitate coverage monitoring in terms of particularity (at the level of the individual), timeliness, and accuracy. Countries in Latin America are rapidly developing and implementing national EIRs to improve the monitoring of immunization coverage. These countries are using a variety of approaches toward system conception and development; integration with larger health information systems; different modalities for data collection, entry, and transmission; and other key features. Some countries are exploring linkages with mHealth (mobile health) for data collection and for automated recall/reminders. Evaluating EIRs and sharing experiences are important to streamlining and improving national EIR development, implementation, and use, and to ensuring its sustainability. PMID:25211576

  3. Some Considerations on the Adoption Registration in the Civil Registry

    Directory of Open Access Journals (Sweden)

    Gabriela LUPŞAN

    2014-12-01

    Full Text Available Filiation is, in a broad sense, an identity element, dependent or not on the biological relationships, that represents, in some situations, either a condition for the existence of a right (e.g. the right to inheritance or for example to conclude a legal act (e.g. marriage. The proof of filiation is the birth certificate drawn up in civil registry or on the material basis of birth, or on the basis of the adoption judgment. In this paper, we aimed at analyzing the final part of the adoption procedure, the subsequent stage for becoming final the adoption judgment, which sets face to face the adopting person or family and the administrative authority, obliged to execute the judge's decision, i.e. to create a filiation relation between the adopted on the one hand and the adoptive parent or parents.

  4. Aneurysm Study of Pipeline in an Observational Registry (ASPIRe)

    Science.gov (United States)

    Kallmes, David F.; Brinjikji, Waleed; Boccardi, Edoardo; Ciceri, Elisa; Diaz, Orlando; Tawk, Rabih; Woo, Henry; Jabbour, Pascal; Albuquerque, Felipe; Chapot, Rene; Bonafe, Alain; Dashti, Shervin R.; Almandoz, Josser E. Delgado; Given, Curtis; Kelly, Michael E.; Cross, DeWitte T.; Duckwiler, Gary; Razack, Nasser; Powers, Ciaran J.; Fischer, Sebastian; Lopes, Demetrius; Harrigan, Mark R.; Huddle, Daniel; Turner, Raymond; Zaidat, Osama O.; Defreyne, Luc; Pereira, Vitor Mendes; Cekirge, Saruhan; Fiorella, David; Hanel, Ricardo A.; Lylyk, Pedro; McDougall, Cameron; Siddiqui, Adnan; Szikora, Istvan; Levy, Elad

    2016-01-01

    Background and Objective Few prospective studies exist evaluating the safety and efficacy of the Pipeline Embolization Device (PED) in the treatment of intracranial aneurysms. The Aneurysm Study of Pipeline In an observational Registry (ASPIRe) study prospectively analyzed rates of complete aneurysm occlusion and neurologic adverse events following PED treatment of intracranial aneurysms. Materials and Methods We performed a multicenter study prospectively evaluating patients with unruptured intracranial aneurysms treated with PED. Primary outcomes included (1) spontaneous rupture of the Pipeline-treated aneurysm; (2) spontaneous nonaneurysmal intracranial hemorrhage (ICH); (3) acute ischemic stroke; (4) parent artery stenosis, and (5) permanent cranial neuropathy. Secondary endpoints were (1) treatment success and (2) morbidity and mortality at the 6-month follow-up. Vascular imaging was evaluated at an independent core laboratory. Results One hundred and ninety-one patients with 207 treated aneurysms were included in this registry. The mean aneurysm size was 14.5 ± 6.9 mm, and the median imaging follow-up was 7.8 months. Twenty-four aneurysms (11.6%) were small, 162 (78.3%) were large and 21 (10.1%) were giant. The median clinical follow-up time was 6.2 months. The neurological morbidity rate was 6.8% (13/191), and the neurological mortality rate was 1.6% (3/191). The combined neurological morbidity/mortality rate was 6.8% (13/191). The most common adverse events were ischemic stroke (4.7%, 9/191) and spontaneous ICH (3.7%, 7/191). The complete occlusion rate at the last follow-up was 74.8% (77/103). Conclusions Our prospective postmarket study confirms that PED treatment of aneurysms in a heterogeneous patient population is safe with low rates of neurological morbidity and mortality. Patients with angiographic follow-up had complete occlusion rates of 75% at 8 months.

  5. Cancer risks among residents of Manitoba Indian reserves, 1970-79

    OpenAIRE

    1985-01-01

    A descriptive epidemiologic study of malignant neoplasms among residents of Indian reserves in Manitoba from 1970 to 1979 based on the Manitoba Cancer Registry revealed an unusual pattern. There was a greater risk for kidney cancer in both sexes and for gallbladder and invasive cervical cancer in women. The risk was reduced, however, for cancer of the lung in men and of the breast in women, cancers with a high incidence in the general Canadian population. Overall the risk for cancer was lower...

  6. Collection of Cancer Stage Data by Classifying Free-text Medical Reports

    OpenAIRE

    McCowan, Iain A.; Moore, Darren C.; Nguyen, Anthony N.; Bowman, Rayleen V; Clarke, Belinda E.; Duhig, Edwina E.; Fry, Mary-Jane

    2007-01-01

    Cancer staging provides a basis for planning clinical management, but also allows for meaningful analysis of cancer outcomes and evaluation of cancer care services. Despite this, stage data in cancer registries is often incomplete, inaccurate, or simply not collected. This article describes a prototype software system (Cancer Stage Interpretation System, CSIS) that automatically extracts cancer staging information from medical reports. The system uses text classification techniques to train s...

  7. CANCER

    Directory of Open Access Journals (Sweden)

    N. Kavoussi

    1973-09-01

    Full Text Available There are many carcinogenetic elements in industry and it is for this reason that study and research concerning the effect of these materials is carried out on a national and international level. The establishment and growth of cancer are affected by different factors in two main areas:-1 The nature of the human or animal including sex, age, point and method of entry, fat metabolism, place of agglomeration of carcinogenetic material, amount of material absorbed by the body and the immunity of the body.2 The different nature of the carcinogenetic material e.g. physical, chemical quality, degree of solvency in fat and purity of impurity of the element. As the development of cancer is dependent upon so many factors, it is extremely difficult to determine whether a causative element is principle or contributory. Some materials are not carcinogenetic when they are pure but become so when they combine with other elements. All of this creates an industrial health problem in that it is almost impossible to plan an adequate prevention and safety program. The body through its system of immunity protects itself against small amounts of carcinogens but when this amount increases and reaches a certain level the body is not longer able to defend itself. ILO advises an effective protection campaign against cancer based on the Well –equipped laboratories, Well-educated personnel, the establishment of industrial hygiene within factories, the regular control of safety systems, and the implementation of industrial health principles and research programs.

  8. Colorectal cancer and self-reported tooth agenesis

    OpenAIRE

    Lindor, Noralane M; Win, Aung Ko; Gallinger, Steven; Daftary, Darshana; Thibodeau, Stephen N.; Silva, Renato; Letra, Ariadne

    2014-01-01

    Background Germline mutations in APC and AXIN2 are both associated with colon neoplasia as well as anomalous dental development. We tested the hypothesis that congenitally missing teeth may occur more commonly in individuals diagnosed with colorectal cancer than in individuals without this diagnosis. Methods Via a survey conducted on 1636 individuals with colorectal cancer (CRC) and 2788 individuals with no colorectal cancer from the Colon Cancer Family Registry, self-reported information on ...

  9. Gastric cancer in Scotland: changing epidemiology, unchanging workload.

    OpenAIRE

    Sedgwick, D M; Akoh, J A; Macintyre, I. M.

    1991-01-01

    OBJECTIVE--To determine the changes in incidence of and mortality from gastric cancer in Scotland between 1978 and 1987 and in the operative workload in Lothian between 1979 and 1988. DESIGN--Analysis of national incidence statistics for gastric cancer derived from the Scottish national cancer registry, deaths from gastric cancer recorded by the registrar general for Scotland, and Lothian surgical audit data. SETTING--Scotland and Lothian Health Board area. PATIENTS--Patients in Scotland with...

  10. Obesity is associated with increased risk of invasive penile cancer

    OpenAIRE

    Barnes, Kerri T.; McDowell, Bradley D.; Button, Anna; Smith, Brian J.; Lynch, Charles F.; Gupta, Amit

    2016-01-01

    Background To validate the association between obesity and penile cancer at a population level, we conducted a matched case–control study linking the Iowa Department of Motor Vehicles Drivers’ License Database (DLD) with cancer surveillance data collected by the State Health Registry of Iowa (SHRI). Methods All men diagnosed with invasive penile squamous cell carcinoma from 1985 to 2010 were identified by SHRI. Two hundred sixty-six cancer cases and 816 cancer-free male controls, selected fro...

  11. Impact of Diabetes Mellitus on the Outcome of Pancreatic Cancer

    OpenAIRE

    Beg, Muhammad Shaalan; Dwivedi, Alok Kumar; Ahmad, Syed Arif; Ali, Sadia; Olowokure, Olugbenga

    2014-01-01

    Introduction Diabetes mellitus (DM) has the potential to impact the pathogenesis, treatment, and outcome of pancreatic cancer. This study evaluates the impact of DM on pancreatic cancer survival. Methods We conducted a retrospective cohort study from the Veterans Affairs (VA) Central Cancer Registry (VACCR) for pancreatic cancer cases between 1995 and 2008. DM and no-DM cases were identified from comorbidity data. Univariate and multivariable analysis was performed. Multiple imputation method...

  12. The Nanomaterial Registry: facilitating the sharing and analysis of data in the diverse nanomaterial community

    Directory of Open Access Journals (Sweden)

    Ostraat ML

    2013-09-01

    Full Text Available Michele L Ostraat, Karmann C Mills, Kimberly A Guzan, Damaris MurryRTI International, Durham, NC, USAAbstract: The amount of data being generated in the nanotechnology research space is significant, and the coordination, sharing, and downstream analysis of the data is complex and consistently deliberated. The complexities of the data are due in large part to the inherently complicated characteristics of nanomaterials. Also, testing protocols and assays used for nanomaterials are diverse and lacking standardization. The Nanomaterial Registry has been developed to address such challenges as the need for standard methods, data formatting, and controlled vocabularies for data sharing. The Registry is an authoritative, web-based tool whose purpose is to simplify the community's level of effort in assessing nanomaterial data from environmental and biological interaction studies. Because the registry is meant to be an authoritative resource, all data-driven content is systematically archived and reviewed by subject-matter experts. To support and advance nanomaterial research, a set of minimal information about nanomaterials (MIAN has been developed and is foundational to the Registry data model. The MIAN has been used to create evaluation and similarity criteria for nanomaterials that are curated into the Registry. The Registry is a publicly available resource that is being built through collaborations with many stakeholder groups in the nanotechnology community, including industry, regulatory, government, and academia. Features of the Registry website (https://www.nanomaterialregistry.org/ currently include search, browse, side-by-side comparison of nanomaterials, compliance ratings based on the quality and quantity of data, and the ability to search for similar nanomaterials within the Registry. This paper is a modification and extension of a proceedings paper for the Institute of Electrical and Electronics Engineers.Keywords: nanoinformatics

  13. Cancer incidence among firefighters

    DEFF Research Database (Denmark)

    Pukkala, Eero; Martinsen, Jan Ivar; Weiderpass, Elisabete;

    2014-01-01

    OBJECTIVES: Firefighters are potentially exposed to a wide range of known and suspected carcinogens through their work. The objectives of this study were to examine the patterns of cancer among Nordic firefighters, and to compare them with the results from previous studies. METHODS: Data for this...... study were drawn from a linkage between the census data for 15 million people from the five Nordic countries and their cancer registries for the period 1961-2005. SIR analyses were conducted with the cancer incidence rates for the entire national study populations used as reference rates. RESULTS: A...... total of 16 422 male firefighters were included in the final cohort. A moderate excess risk was seen for all cancer sites combined, (SIR=1.06, 95% CI 1.02 to 1.11). There were statistically significant excesses in the age category of 30-49 years in prostate cancer (SIR=2.59, 95% CI 1.34 to 4.52) and...

  14. Parental Exposure to Pesticides and Childhood Brain Cancer: U.S. Atlantic Coast Childhood Brain Cancer Study

    OpenAIRE

    Shim, Youn K.; Mlynarek, Steven P.; van Wijngaarden, Edwin

    2009-01-01

    Background The etiology of childhood brain cancer remains largely unknown. However, previous studies have yielded suggestive associations with parental pesticide use. Objectives We aimed to evaluate parental exposure to pesticides at home and on the job in relation to the occurrence of brain cancer in children. Methods We included 526 one-to-one–matched case–control pairs. Brain cancer cases were diagnosed at < 10 years of age, and were identified from statewide cancer registries of four U.S....

  15. Receptivity and preferences of pancreatic cancer family members for participating in lifestyle programs to reduce cancer risk

    OpenAIRE

    Howell, Lisa A; Sinicrope, Pamela S.; Brockman, Tabetha A; Patten, Christi A.; Decker, Paul A.; Ehlers, Shawna L.; Nadeau, Ashley; Rabe, Kari G.; Breitkopf, Carmen Radecki; Petersen, Gloria M.

    2013-01-01

    Background Cancer is a shared family experience that might provide an opportunity for lifestyle change among at-risk family members. The purpose of this study was to assess receptivity and preferences for cancer risk reduction programs among at-risk family members with two or more relatives affected with pancreas cancer. Methods We surveyed 401 at-risk family members in an existing pancreatic cancer family registry. Participants completed a mailed survey which examined demographic, medical, a...

  16. Validity of the recorded codes of gonadotropin-releasing hormone agonist treatment and orchiectomies in the Danish National Patient Registry

    Directory of Open Access Journals (Sweden)

    Jespersen CG

    2012-06-01

    Full Text Available Christina Gade Jespersen,1,2 Michael Borre,1 Mette Nørgaard21Department of Urology, Aarhus University Hospital, Aarhus, Denmark; 2Department of Clinical Epidemiology, Institute of Clinical Medicine, Aarhus University Hospital, Aarhus, DenmarkPurpose: Large-scale observational studies based on existing medical databases may have an important role in studies of long-term effects of different treatments in prostate cancer patients if the coding of the treatment is valid. We therefore estimated the positive predictive value (PPV and negative predictive value (NPV of hospital codes for gonadotropin-releasing hormone (GnRH agonist treatment and orchiectomies in the Danish National Patient Registry (DNPR.Patients and methods: From Danish prostate cancer patients we selected 100 patients who were registered as users of GnRH agonists, 100 patients who were registered as nonusers of GnRH agonists, 50 patients who were registered as bilateral orchidectomized, and 50 patients who were not registered as orchidectomized in the DNPR between January 1, 2002 and December 31, 2008. From the patients' medical files we recorded codes for GnRH agonist treatment and orchiectomies, including dates of treatment from date of first prostate cancer diagnosis and onward.Results: The PPV of GnRH agonist treatment coding in the DNPR was 93% (95% confidence interval [CI]: 86.1–97.1, and the NPV was 94% (95% CI: 87.4–97.8. Both the PPV and NPV of orchiectomy coding in the DNPR were 100% (97.5% CI: 92.9–100.Conclusion: We measured the validity of codes for GnRH agonist treatment and orchiectomies in the DNPR among prostate cancer patients and found high PPV and NPV. Thus, the DNPR remains a valuable tool for clinical epidemiological studies of GnRH agonist treatment and orchiectomies in the treatment of prostate cancer.Keywords: prostate cancer, orchiectomy, positive predictive value, negative predictive value

  17. Use of azathioprine and the risk of cancer in inflammatory bowel disease

    DEFF Research Database (Denmark)

    Pasternak, Björn; Svanström, Henrik; Schmiegelow, Kjeld;

    2013-01-01

    %) used azathioprine) in Denmark from 1997 to 2008. We linked registry data on filled drug prescriptions, cancer diagnoses, and covariates and compared rates of overall incident cancer and cancer subgroups between users and nonusers of azathioprine, adjusting for propensity scores. During a median 7...

  18. Stage-specific survival of epithelial cancers in North-Holland/Flevoland, The Netherlands

    NARCIS (Netherlands)

    Visser, O.; Leeuwen, van F.E.

    2005-01-01

    While stage is the most important factor for determining cancer survival, population-based survival data according to stage are rarely presented. We present such data for a large population diagnosed with cancer in the area covered by the Amsterdam Cancer Registry for the period 1989-2001 (n=108,251

  19. Population-based utilization of radiation therapy by a Canadian breast cancer cohort

    OpenAIRE

    Mittmann, N; Seung, S.J.; Liu, N.; Porter, J.; Saskin, R.; Hoch, J.S.; Evans, W.K.; Leighl, N.B.; Trudeau, M.; Earle, C.C.

    2014-01-01

    We examined trends in radiation therapy (rt) utilization by a population-based breast cancer cohort in Ontario. The provincial cancer registry provided a breast cancer cohort based on diagnosis dates from April 1, 2005, to March 31, 2010. Staging information was also available. The cohort was then linked, by encrypted health card number, to linkable administrative datasets, including rt utilization.

  20. Widening socio-economic inequalities in oral cancer incidence in Scotland, 1976–2002

    OpenAIRE

    Conway, D.I.; Brewster, D H; McKinney, P. A.; Stark, J.; McMahon, A.D.; Macpherson, L.M.D.

    2007-01-01

    Oral cancer incidence was investigated among 10 857 individuals using Scottish Cancer Registry data. Since 1980 the incidence of oral cancer among males in Scotland has significantly increased, the rise occurring almost entirely in the most deprived areas of residence.

  1. Breast cancer risk associated with different HRT formulations: a register-based case-control study

    OpenAIRE

    Thai Do; Möhner Sabine; Heinemann Lothar AJ; Dinger Juergen C; Assmann Anita

    2006-01-01

    Abstract Background Previous epidemiological studies have inconsistently shown a modestly increased breast cancer risk associated with hormone replacement therapy (HRT). Limited information is available about different formulations – particularly concerning different progestins. Methods A case-control study was performed within Germany in collaboration with regional cancer registries and tumor centers. Up to 5 controls were matched breast cancer cases. Conditional logistic regression analysis...

  2. A Review of Current Fixation Use and Registry Outcomes in Total Hip Arthroplasty

    DEFF Research Database (Denmark)

    Troelsen, Anders; Malchau, Erik; Sillesen, Nanna Hylleholt; Malchau, Henrik

    2013-01-01

    the oldest age group of each of the registries we surveyed (age older than 65 years for England-Wales; age older than 75 years in three registries), cemented fixation was associated with a lower risk of revision than was uncemented fixation. CONCLUSIONS: Increasing use of uncemented fixation in THA is...... a worldwide phenomenon. This trend is paradoxic, given that registry data, which represent nationwide THA outcomes, suggest that cemented fixation in patients older than 75 years results in the lowest risk of revision. LEVEL OF EVIDENCE: Level II, systematic review. See Guidelines for Authors for a...

  3. Developing a survey instrument to assess the readiness of primary care data, genetic and disease registries to conduct linked research: TRANSFoRm International Research Readiness (TIRRE) survey instrument

    OpenAIRE

    Emily Leppenwell; Simon de Lusignan; Marilia Tristan Vicente; Georgios Michalakidis; Paul Krause; Steve Thompson; Mark McGilchrist; Terry Desombre; Adel Taweel; Brendan Delaney

    2013-01-01

    Background Clinical data are collected for routine care in family practice; there are also a growing number of genetic and cancer registry data repositories. The Translational Research and Patient Safety in Europe (TRANSFoRm) project seeks to facilitate research using linked data from more than one source. We performed a requirements analysis which identified a wide range of data and business process requirements that need to be met before linking primary care and either genetic or disease re...

  4. Chevron Canada Resources voluntary challenge and registry 2000 annual report

    International Nuclear Information System (INIS)

    Chevron Canada Resources has been a registered member of the Voluntary Challenge and Registry (VCR) program since 1995. During the course of 2000, Chevron Canada Resources continued in its efforts toward raising awareness at the employee level concerning the program while it strove to maintain the system previously established called Protecting People and the Environment. Some of the successes experienced by the company in 2000 were: a 6 per cent reduction in flare gas volumes per unit production from the levels of 1990, a 0.3 per cent reduction in total carbon dioxide emissions from the levels of 1999, the elimination of 4,317 tonnes of carbon dioxide equivalent emissions, and the reduction, in 2000, of total carbon dioxide emissions to below year 2001 projections. The forecast for carbon dioxide emissions in 2001 by Chevron Canada Resources is 108 per cent of 1990 levels, which can be explained by a significant increase in more energy intensive products and increasing water volumes in maturing fields. The following initiatives are being implemented to support further improvement in energy and emissions management and the reduction of carbon dioxide emissions: (1) training programs for employees in design and operations, (2) the identification of opportunities within facilities for optimization of energy consumption, (3) a contribution to research and development programs in emissions control and energy efficiency, and (4) the continuous investigating of alternative practices to reduce greenhouse gas emissions and the conservation of resources. 2 tabs., 8 figs

  5. Holt Oram syndrome: a registry-based study in Europe

    DEFF Research Database (Denmark)

    Barisic, Ingeborg; Boban, Ljubica; Greenlees, Ruth; Garne, Ester; Wellesley, Diana; Calzolari, Elisa; Addor, Marie-Claude; Arriola, Larraitz; Bergman, Jorieke Eh; Braz, Paula; Budd, Judith Ls; Gatt, Miriam; Haeusler, Martin; Khoshnood, Babak; Klungsoyr, Kari; McDonnell, Bob; Nelen, Vera; Pierini, Anna; Queisser-Wahrendorf, Annette; Rankin, Judith; Rissmann, Anke; Rounding, Catherine; Tucker, David; Verellen-Dumoulin, Christine; Dolk, Helen

    2014-01-01

    prenatally, 55.4% (36/65) at birth, 10.7% (7/65) in the first week of life, and 3.1% (2/65) in the first year of life. The prenatal detection rate was 39.2% (20/51), with no significant change over the study period. In 55% (11/20) of prenatally detected cases, parents decided to terminate pregnancy. Thumb...... anomalies were reported in all cases. Agenesis/hypoplasia of radius was present in 49.2% (30/61), ulnar aplasia/hypoplasia in 24.6% (15/61) and humerus hypoplasia/phocomelia in 42.6% (26/61) of patients. Congenital heart defects (CHD) were recorded in 78.7% (48/61) of patients. Isolated septal defects were...... present in 54.2 (26/48), while 25% (12/48) of patients had complex/severe CHD. The mean prevalence of HOS diagnosed prenatally or in the early years of life in European registries was 0.7 per 100,000 births or 1:135,615 births. CONCLUSIONS: HOS is a rare genetic condition showing regional variation in its...

  6. Optic neuritis: Experience from a south Indian demyelinating disease registry

    Directory of Open Access Journals (Sweden)

    Lekha Pandit

    2012-01-01

    Full Text Available Background: Natural history of optic neuritis (OPN has not been studied in India. Aim: To study consecutive patients with optic neuritis as the initial manifestation of the neurologic disease and with disease duration of 3 or more years registered in the Mangalore Demyelinating Disease Registry. Materials and Methods: The study included 59 patients with a primary diagnosis of optic neuritis (confirmed by either an ophthalmologist or a neurologist or both. All the patients were investigated and followed-up in the clinic. Results: During the follow-up of the 59 patients, 29 (49% patients developed multiple sclerosis (MS; 3 (5% patients neuromyelitis optica (NMO; and 13 (22% patients chronic relapsing inflammatory optic neuritis (CRION, while the remaining 14 (24% did not either progress or relapse, monophasic OPN. An initial abnormal magnetic resonance imaging predicted conversion to MS in all 7 patients who had imaging at onset. Patients with NMO were left with significant residual visual loss distinguishing NMO from MS. In this large series of patients with CRION, nearly 50% of patients had deterioration in vision while steroids were being tapered. Long-term immunosuppression was essential for maintaining good visual outcome in both NMO and CRION. Conclusions: Optic neuritis in India appears similar to that in the West with nearly 50% developing MS in the long term.

  7. Validating the use of Medicare Australia billing data to examine trends in skin cancer

    OpenAIRE

    Eshini Perera; Neiraja Gnaneswaran; Marlon Perera; Rodney Sinclair

    2015-01-01

    Background:  Epidemiological data surrounding non-melanomatous skin cancer (NMSC) is highly variable, in part due to the lack of government cancer registries. Several studies employ the use of Medical Australia (MA) rebate data in assessing such trends, the validity of which has not been studied in the past. Conversely, melanoma skin cancer is a notifiable disease, and thus, MA and cancer registry data is readily available. The aim of the current study is to assess the use of MA for epidemiol...

  8. Lung cancer molecular epidemiology in China: recent trends

    OpenAIRE

    Zhou, Caicun

    2014-01-01

    Lung cancer is both the most common diagnosed cancer and the leading cause of cancer related deaths in China. During the past three decades, the incidence and mortality of lung cancer in China are increasing rapidly. According to data from National Central Cancer Registry (NCCR) in 2010, the crude incidence of lung cancer in China was 46.08 per 100,000 population (61.86 per 100,000 men and 29.54 per 100,000 women), with an estimated over 600,000 new diagnosed lung cancer patients (416,333 mal...

  9. United States Transuranium and Uranium Registries. Annual report February 1, 2001--January 31, 2002

    Energy Technology Data Exchange (ETDEWEB)

    Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed)

    2002-07-01

    This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed.

  10. United States Transuranium and Uranium Registries. Annual report February 1, 2001 - January 31, 2002

    International Nuclear Information System (INIS)

    This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed

  11. Environmental Protection Agency (EPA) Facility Registry Service (FRS) Wastewater Treatment Plants

    Data.gov (United States)

    Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...

  12. Paper 3: EUROCAT data quality indicators for population-based registries of congenital anomalies

    DEFF Research Database (Denmark)

    Loane, Maria; Dolk, Helen; Garne, Ester;

    2011-01-01

    The European Surveillance of Congenital Anomalies (EUROCAT) network of population-based congenital anomaly registries is an important source of epidemiologic information on congenital anomalies in Europe covering live births, fetal deaths from 20 weeks gestation, and terminations of pregnancy for...... fetal anomaly. EUROCAT's policy is to strive for high-quality data, while ensuring consistency and transparency across all member registries. A set of 30 data quality indicators (DQIs) was developed to assess five key elements of data quality: completeness of case ascertainment, accuracy of diagnosis......, completeness of information on EUROCAT variables, timeliness of data transmission, and availability of population denominator information. This article describes each of the individual DQIs and presents the output for each registry as well as the EUROCAT (unweighted) average, for 29 full member registries for...

  13. The National Marrow Donor Program and Be The Match Registry | NIH MedlinePlus the Magazine

    Science.gov (United States)

    ... NMDP) and its Be The Match Registry are nonprofit organizations dedicated to creating an opportunity for all ... Latest NIH Research Working together for better transplant outcomes Researchers keep working to learn more about the ...

  14. 77 FR 22284 - Notice of Establishment of a Veterinary Services Stakeholder Registry

    Science.gov (United States)

    2012-04-13

    ... Animal and Plant Health Inspection Service Notice of Establishment of a Veterinary Services Stakeholder... announces the availability of a new Veterinary Services email subscription service. FOR FURTHER INFORMATION... Inspection Service (APHIS) has established a Veterinary Services (VS) Stakeholder Registry, an...

  15. Swedish quality registry for pain rehabilitation: : purpose, design, implementation and characteristics of referred patients

    OpenAIRE

    Nyberg, Vanja E; Sanne, Harald; Sjölund, Bengt H

    2011-01-01

    Objective: In order to facilitate comparisons of pain rehabilitationprogrammes in Sweden and to enable audit spirals for single programmes as well as outcome studies, the Swedish Association for Rehabilitation Medicine initiated a national quality registry in 1995. Patients: Referred for rehabilitation due to pain-related disability. Methods: The registry collects standardized self-reports before assessment, after rehabilitation and one year later, covering demographic, educational and psycho...

  16. The Danish National Patient Registry: a review of content, data quality, and research potential

    OpenAIRE

    Schmidt, Morten

    2015-01-01

    Morten Schmidt,1 Sigrun Alba Johannesdottir Schmidt,1 Jakob Lynge Sandegaard,2 Vera Ehrenstein,1 Lars Pedersen,1 Henrik Toft Sørensen11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, 2Department of Health Documentation, State Serum Institute, Copenhagen, DenmarkBackground: The Danish National Patient Registry (DNPR) is one of the world's oldest nationwide hospital registries and is used extensively for research. Many studies have validated algorithm...

  17. The Danish National Patient Registry: a review of content, data quality, and research potential

    OpenAIRE

    Schmidt M.; Schmidt SAJ; Sandegaard JL; Ehrenstein V; Pedersen L; Sørensen HT

    2015-01-01

    Morten Schmidt,1 Sigrun Alba Johannesdottir Schmidt,1 Jakob Lynge Sandegaard,2 Vera Ehrenstein,1 Lars Pedersen,1 Henrik Toft Sørensen11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, 2Department of Health Documentation, State Serum Institute, Copenhagen, DenmarkBackground: The Danish National Patient Registry (DNPR) is one of the world's oldest nationwide hospital registries and is used extensively for research. Many studies have validated algorithms for id...

  18. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries

    Directory of Open Access Journals (Sweden)

    Codreanu C

    2015-01-01

    Full Text Available Catalin O Codreanu,1 Nemanja Damjanov2 1Rheumatology Department, Center of Rheumatic Diseases, Bucharest, Romania; 2Institute of Rheumatology, School of Medicine, University of Belgrade, Belgrade, SerbiaAbstract: Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA. Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]. The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. Keywords: biologic therapy, biologic drugs, adverse events, infections, pregnancy, malignancies

  19. Improving Patient Outcomes in Gynecology: The Role of Large Data Registries and Big Data Analytics.

    Science.gov (United States)

    Erekson, Elisabeth A; Iglesia, Cheryl B

    2015-01-01

    Value-based care is quality health care delivered effectively and efficiently. Data registries were created to collect accurate information on patients with enough clinical information to allow for adequate risk adjustment of postoperative outcomes. Because most gynecologic procedures are elective and preference-sensitive, offering nonsurgical alternatives is an important quality measure. The Center for Medicare and Medicaid Services (CMS), in conjunction with mandates from the Affordable Care Act, passed by Congress in 2010, has developed several initiatives centered on the concept of paying for quality care, and 1 of the first CMS initiatives began with instituting payment penalties for hospital-acquired conditions, such as catheter-associated urinary tract infections, central line-associated bloodstream infections, and surgical site infections. Registries specific to gynecology include the Society for Assisted Reproductive Technology registry established in 1996; the FIBROID registry established in 1999; the Pelvic Floor Disorders Registry established by the American Urogynecologic Society in conjunction with other societies (2014); and the Society of Gynecologic Oncologists Clinical Outcomes Registry. Data from these registries can be used to critically analyze practice patterns, find best practices, and enact meaningful changes in systems and workflow. The ultimate goal of data registries and clinical support tools derived from big data is to access accurate and meaningful data from electronic records without repetitive chart review or the need for direct data entry. The most efficient operating systems will include open-access computer codes that abstract data, in compliance with privacy regulations, in real-time to provide information about our patients, their outcomes, and the quality of care that we deliver. PMID:26188310

  20. Renal replacement therapy in Europe: a summary of the 2011 ERA–EDTA Registry Annual Report

    Science.gov (United States)

    Noordzij, Marlies; Kramer, Anneke; Abad Diez, José M.; Alonso de la Torre, Ramón; Arcos Fuster, Emma; Bikbov, Boris T.; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Čala, Svetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Díaz Tejeiro, Rafael; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik; García Bazaga, María de los Angelos; Garneata, Liliana; Golan, Eliezer; Gonzalez Fernández, Raquel; Heaf, James G.; Hoitsma, Andries; Ioannidis, George A.; Kolesnyk, Mykola; Kramar, Reinhard; Lasalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; van de Luijtgaarden, Moniek W.M.; Macário, Fernando; Magaz, Ángela; Martín Escobar, Eduardo; de Meester, Johan; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera, Celestino; Pippias, Maria; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rodríguez Hernández, Aurelio; Rutkowski, Boleslaw; Spustová, Viera; Stel, Vianda S.; Stojceva-Taneva, Olivera; Süleymanlar, Gültekin; Wanner, Christoph; Jager, Kitty J.

    2014-01-01

    Background This article provides a summary of the 2011 ERA–EDTA Registry Annual Report (available at www.era-edta-reg.org). Methods Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. From 27 registries, individual patient data were received, whereas 17 registries contributed data in aggregated form. We present the incidence and prevalence of RRT, and renal transplant rates in 2011. In addition, survival probabilities and expected remaining lifetimes were calculated for those registries providing individual patient data. Results The overall unadjusted incidence rate of RRT in 2011 among all registries reporting to the ERA–EDTA Registry was 117 per million population (pmp) (n = 71.631). Incidence rates varied from 24 pmp in Ukraine to 238 pmp in Turkey. The overall unadjusted prevalence of RRT for ESRD on 31 December 2011 was 692 pmp (n = 425 824). The highest prevalence was reported by Portugal (1662 pmp) and the lowest by Ukraine (131 pmp). Among all registries, a total of 22 814 renal transplantations were performed (37 pmp). The highest overall transplant rate was reported from Spain, Cantabria (81 pmp), whereas the highest rate of living donor transplants was reported from Turkey (39 pmp). For patients who started RRT between 2002 and 2006, the unadjusted 5-year patient survival on RRT was 46.8% [95% confidence interval (CI) 46.6–47.0], and on dialysis 39.3% (95% CI 39.2–39.4). The unadjusted 5-year patient survival after the first renal transplantation performed between 2002 and 2006 was 86.7% (95% CI 86.2–87.2) for kidneys from deceased donors and 94.3% (95% CI 93.6–95.0) for kidneys from living donors. PMID:25852881

  1. Norwegian Childhood Diabetes Registry: Childhood onset diabetes in Norway 1973-2012

    OpenAIRE

    Torild Skrivarhaug

    2013-01-01

    The Norwegian Childhood Diabetes Registry (NCDR) is a prospective, population-based, nationwide registry which systematically register all incident cases of childhood diabetes, and systematically monitors the outcome of diabetes care in children and adolescents. NCDR includes data on childhood onset diabetes since 1973, and diabetes care outcome since 2001. NCDR was founded with the following objectives: To improve the diagnostics, classifications and treatment of childhood-onset diabetes, su...

  2. The role of the central registry in the safety and security of radioactive materials in Hungary

    International Nuclear Information System (INIS)

    After a brief overview of the Hungarian legislation and regulatory infrastructure the report provides information on the number of companies and licensees using radioactive materials and explains also the role of the established central registry of radiation sources and radioactive materials in Hungary for improving the safety and security of radioactive materials in the country. It concludes that a reliable nationwide central registry can be a very useful tool for increasing the safety and security of radiation sources and radioactive materials. (author)

  3. The global aHUS registry: methodology and initial patient characteristics

    OpenAIRE

    Licht, Christoph; Ardissino, Gianluigi; Ariceta, Gema; Cohen, David; Cole, J Alexander; Gasteyger, Christoph; Greenbaum, Larry A.; Johnson, Sally; Ogawa, Masayo; Schaefer, Franz; Vande Walle, Johan; Frémeaux-Bacchi, Véronique

    2015-01-01

    Background: Atypical hemolytic uremic syndrome (aHUS) is a rare, genetically-mediated systemic disease most often caused by chronic, uncontrolled complement activation that leads to systemic thrombotic microangiopathy (TMA) and renal and other end-organ damage. Methods: The global aHUS Registry, initiated in April 2012, is an observational, noninterventional, multicenter registry designed to collect demographic characteristics, medical and disease history, treatment effectiveness and safety...

  4. Novel associations in disorders of sex development: findings from the I-DSD registry

    OpenAIRE

    Cox, Kathryn; Bryce, Jillian; Jiang, Jipu; Rodie, Martina; Sinnott, Richard; Alkhawari, Mona; Arlt, Wiebke; Audi, Laura; Balsamo, Antonio; Bertelloni, Silvano; Cools, Martine; Darendeliler, Feyza; Drop, Stenvert; Ellaithi, Mona; Guran, Tulay

    2014-01-01

    Context: The focus of care in disorders of sex development (DSD) is often directed to issues related to sex and gender development. In addition, the molecular etiology remains unclear in the majority of cases. Objective: To report the range of associated conditions identified in the international DSD (I-DSD) Registry. Design, Setting, and Patients: Anonymized data were extracted from the I-DSD Registry for diagnosis, karyotype, sex of rearing, genetic investigations, and associ...

  5. Geographic disparities in late stage breast cancer incidence: results from eight states in the United States

    OpenAIRE

    Tatalovich, Zaria; Zhu, Li; Rolin, Alicia; Lewis, Denise R.; Harlan, Linda C.; Winn, Deborah M.

    2015-01-01

    Background Late stage of cancer at diagnosis is an important predictor of cancer mortality. In many areas worldwide, cancer registry systems, available data and mapping technologies can provide information about late stage cancer by geographical regions, offering valuable opportunities to identify areas where further investigation and interventions are needed. The current study examined geographical variation in late stage breast cancer incidence across eight states in the United States with ...

  6. Urban-Rural Disparity of Breast Cancer and Socioeconomic Risk Factors in China

    OpenAIRE

    Fei, Xufeng; Wu, Jiaping; Kong, Zhe; Christakos, George

    2015-01-01

    Breast cancer is one of the most commonly diagnosed cancers worldwide. The primary aim of this work is the study of breast cancer disparity among Chinese women in urban vs. rural regions and its associations with socioeconomic factors. Data on breast cancer incidence were obtained from the Chinese cancer registry annual report (2005–2009). The ten socioeconomic factors considered in this study were obtained from the national population 2000 census and the Chinese city/county statistical yearb...

  7. Intake of Soy Products and Other Foods and Gastric Cancer Risk: A Prospective Study

    OpenAIRE

    Ko, Kwang-Pil; Park, Sue K.; Yang, Jae Jeong; Ma, Seung Hyun; Gwack, Jin; Shin, Aesun; Kim, Yeonju; Kang, Daehee; Chang, Soung-Hoon; Shin, Hai-Rim; Yoo, Keun-Young

    2013-01-01

    Background Gastric cancer, the most common cancer in the world, is affected by some foods or food groups. We examined the relationship between dietary intake and stomach cancer risk in the Korean Multi-Center Cancer Cohort (KMCC). Methods The KMCC included 19 688 Korean men and women who were enrolled from 1993 to 2004. Of those subjects, 9724 completed a brief 14-food frequency questionnaire at baseline. Through record linkage with the Korean Central Cancer Registry and National Death Certif...

  8. Comparison of breast cancer survival in two populations: Ardabil, Iran and British Columbia, Canada

    OpenAIRE

    Babaei Masoud; Nouraie Mehdi; Ghorbani Anahita; Bashash Morteza; Bajdik Chris; Hislop T Gregory; Sadjadi Alireza; Malekzadeh Reza; Yavari Parvin

    2009-01-01

    Abstract Background Patterns in survival can provide information about the burden and severity of cancer, help uncover gaps in systemic policy and program delivery, and support the planning of enhanced cancer control systems. The aim of this paper is to describe the one-year survival rates for breast cancer in two populations using population-based cancer registries: Ardabil, Iran, and British Columbia (BC), Canada. Methods All newly diagnosed cases of female breast cancer were identified in ...

  9. The importance of national registries/databases in metabolic surgery: the UK experience.

    Science.gov (United States)

    Hopkins, James; Welbourn, Richard

    2016-07-01

    The United Kingdom (UK) National Bariatric Surgery Registry (NBSR) is a registry of self-reported bariatric surgery from members of the British Obesity and Metabolic Surgery Society. We describe the registry and its usefulness and limitations in improving the knowledge base for metabolic and bariatric surgery, reviewing the main results for the first 5 years of its introduction since 2009. We also review the reports of other national and international bariatric surgery registries and compare the baseline characteristics, including metabolic parameters, of the patients entered into the NBSR. A total of 161 surgeons from 137 UK bariatric surgery units entered 32,212 anonymized patient records. Of these patients, 76% were female, mean weight at preoperative clinic was 135.6 kg, body mass index was 48.8 kg/m(2), and 76.5 % had publicly funded National Health Service treatment. The 3 most common procedures were gastric bypass (55.3%), gastric banding (20.4%), and sleeve gastrectomy (20.2%), although the prevalence of these changed over time and was different between public and private sectors. The 2-year rate for diabetes improvement was 61.5%, but this varied with the duration of diabetes and baseline diabetic therapy. The data were similar to those from other large registries. Establishment of large national registries such as the NBSR has the potential to provide "real-world" information for quality assurance and the effect of metabolic and bariatric surgery on the whole operated population. PMID:27313193

  10. Systematic Reviewers in Clinical Neurology Do Not Routinely Search Clinical Trials Registries.

    Directory of Open Access Journals (Sweden)

    Philip Marcus Sinnett

    Full Text Available We examined the use of clinical trials registries in published systematic reviews and meta-analyses from clinical neurology. A review of publications between January 1, 2008 and December 31, 2014 from five neuroscience journals (Annals of Neurology, Brain, Lancet Neurology, Neurology, and The Neuroscientist was performed to identify eligible systematic reviews. The systematic reviews comprising the final sample were independently appraised to determine if clinical trials registries had been included as part of the search process. Studies acknowledging the use of a trials registry were further examined to determine whether trial data had been incorporated into the analysis. The initial search yielded 194 studies, of which 78 systematic reviews met the selection criteria. Of those, five acknowledged the use of a specific clinical trials registry: four reviewed unpublished trial data and two incorporated unpublished trial data into their results. Based on our sample of systematic reviews, there was no increase in the use of trials registries in systematic review searches over time. Few systematic reviews published in clinical neurology journals included data from relevant clinical trials registries.

  11. [What can we learn in future from the data of the German Arthroplasty Registry (EPRD) in comparison to other registries?].

    Science.gov (United States)

    Jansson, V; Steinbrück, A; Hassenpflug, J

    2016-06-01

    The German Arthroplasty Registry (EPRD) was founded in 2010 and has been in full operation since 2014. Previous attempts at a systematic data collection of elective and non-elective knee and hip replacement in Germany failed mainly because of the long-term lack of funding. The EPRD is an interdisciplinary collaborative partnership between the German Association of Orthopedics and Orthopedic Surgery (DGOOC), all implant manufacturers of the German Medical Technology Association (BVMed), health insurers (AOK and the Association of Additional Healthcare Insurance) and hospitals (German Hospital Federation). As part of this cooperation a worldwide unique implant database has been set up, which includes all relevant components and a detailed description of implant specifications. This implant library enables a detailed evaluation of implant survival, revision rates and possible inferior implant performance of knee and hip replacements in Germany. At the end of 2015 the EPRD encompassed over 200,000 registered operations. Due to the high number of hip and knee arthroplasties in Germany with many different implants from different manufacturers there will be a rapid growth of data that are available for a national and also international comparison of the results. PMID:27160728

  12. Urologic cancer in China.

    Science.gov (United States)

    Pang, Cheng; Guan, Youyan; Li, Hongbo; Chen, Wanqing; Zhu, Gang

    2016-06-01

    Cancer remains to be the second most common cause of death, and its incidence and mortality rates are increasing in China. According to the 2015 National Central Cancer Registry (NCCR) of China, the incidence of bladder cancer and prostate cancer ranked sixth and seventh, respectively, in male cancers. The majority of prostate cancer patients were diagnosed at an advanced stage. Early diagnosis of prostate cancer is the key to improve prostate cancer survival in China. Radical prostatectomy or radical radiotherapy is the main treatment for localized prostate cancer, and a comprehensive therapy based on androgen deprivation therapy is the treatment for advanced disease. The most common histologic types of bladder cancer in China were urothelial carcinoma, followed by adenocarcinoma and squamous carcinoma. The majority of patients were diagnosed using white-light cystoscopy with biopsy. Fluorescence and narrow-band imaging cystoscopy had additional detection rates and are becoming more popular. Following Chinese guidelines, most non-muscle invasive bladder cancer patients were treated with diagnostic transurethral resection and more than half of the muscle invasive bladder cancer patients were treated with radical cystectomy. Due to the increased detection rate of kidney tumors by ultrasound in physical examination, the number of incidentally diagnosed renal cell carcinoma has increased. Localized kidney cancers are more and more often treated by nephron-sparing surgery. Radical nephrectomy is still the main treatment option for patients with locally advanced renal cell carcinoma. Both laparoscopic and robotic-assisted laparoscopic surgeries have been used in big medical centers. Both testicular cancer and penile cancer have lower incidence levels than that in Europe. As we have an enormous population base, the absolute patient number is big. The diagnosis and treatment follows the Chinese guidelines. In China, both medical professionals and public should concern

  13. Birthweight and Childhood Cancer

    DEFF Research Database (Denmark)

    Paltiel, Ora; Tikellis, Gabriella; Linet, Martha; Golding, Jean; Lemeshow, Stanley; Phillips, Gary; Lamb, Karen; Stoltenberg, Camilla; Håberg, Siri E; Strøm, Marin; Granstrøm, Charlotta; Northstone, Kate; Klebanoff, Mark; Ponsonby, Anne-Louise; Milne, Elizabeth; Pedersen, Marie; Kogevinas, Manolis; Ha, Eunhee; Dwyer, Terence

    2015-01-01

    BACKGROUND: Evidence relating childhood cancer to high birthweight is derived primarily from registry and case-control studies. We aimed to investigate this association, exploring the potential modifying roles of age at diagnosis and maternal anthropometrics, using prospectively collected data from...... the International Childhood Cancer Cohort Consortium. METHODS: We pooled data on infant and parental characteristics and cancer incidence from six geographically and temporally diverse member cohorts [the Avon Longitudinal Study of Parents and Children (UK), the Collaborative Perinatal Project (USA......). Childhood cancer (377 cases diagnosed prior to age 15 years) risk was analysed by type (all sites, leukaemia, acute lymphoblastic leukaemia, and non-leukaemia) and age at diagnosis. We estimated hazard ratios (HR) and 95% confidence intervals (CI) from Cox proportional hazards models stratified by cohort...

  14. Triptan safety during pregnancy: a Norwegian population registry study

    International Nuclear Information System (INIS)

    Knowledge on triptan safety during pregnancy remains limited to their class effect or studies on sumatriptan. Our aim was to evaluate the individual effect of four most frequently used triptans on several pregnancy outcomes. We used the Norwegian prescription database to access information on triptans redeemed by pregnant women living in Norway between 2004 and 2007. This database was linked to the Medical Birth Registry of Norway covering every institutional delivery in Norway and providing information on pregnancy, delivery, maternal and neonatal health. Estimates of associations with pregnancy outcomes were obtained by Generalised Estimation Equations analysis. Of the 181,125 women in our study, 1,465 (0.8 %) redeemed triptans during pregnancy, and 1,095 (0.6 %) redeemed triptans before pregnancy only (disease comparison group). The population comparison group comprised the remaining 178,565 women. Using this group as reference, we found no associations between triptan redemption during pregnancy and congenital malformations. Second trimester redemption was associated with postpartum haemorrhage (adjusted OR 1.57; 95 % CI 1.19–2.07). The disease comparison group had an increased risk of major congenital malformations (adjusted OR 1.48; 95 % CI 1.11–1.97), low birth weight (adjusted OR 1.39; 95 % CI 1.08–1.81), and preterm birth (adjusted OR 1.30; 95 % CI 1.06–1.60). The association of triptans with postpartum hemorrhage could be attributable to decreased platelet agreeability occurring in severe migraine. Likewise, the increased risk of major congenital malformations and other adverse pregnancy outcomes in the disease comparison group might be attributable to migraine severity

  15. Survival of patients with prostate cancer

    OpenAIRE

    Fabienne Camilo da Silveira Pirajá; Rafael Bandeira Lages; Uylma Assunção Costa; João Batista Mendes Teles; Viriato Campelo

    2013-01-01

    Objective: To analyze the survival after five years among patients treated of prostate cancer at Hospital São Marcos. Methods: A descriptive population-based epidemiological study performed in Teresina-PI, evaluating a hospital cohort consisting of 71 patients of Hospital São Marcos, enrolled in Hospital Cancer Registry (HCR) from 2000 to 2001, under ICD10 - C61. The variables considered in the evaluation of survival were: age group, tumor staging and skin color. The Kaplan-Meier method ...

  16. Cancer risk following radiotherapy of cervical cancer: A preliminary report

    International Nuclear Information System (INIS)

    Women treated for cervical cancer were selected for study because (a) doses to body organs following radiotherapy can be accurately determined and vary sufficiently to permit dose-response evaluations, (b) organs remote from the cervix receive low-dose exposures in the range of current scientific interest, (c) treatment is relatively successful and many patients survive long enough to be at risk of late complications of radiotherapy, and (d) several nonexposed groups of women with cervical cancer are also available for comparison. In addition, population-based cancer registries provide an opportunity to inexpensively study large numbers of individuals over many decades. The careful procedures normally used by cancer registries to record second primary cancers facilitate the study of cancer incidence for which a wider view of radiation risk is expected than can be seen in investigations of mortality. Other special features of studies of cervical cancer patients include the ability to assess the effects of very large partial-body exposures, differences in organ sensitivities to radiation, interactions of radiation with biological factors such as age, and the duration of carcinogenic response

  17. Variations in Cause and Management of Atrial Fibrillation in a Prospective Registry of 15 400 Emergency Department Patients in 46 Countries The RE-LY Atrial Fibrillation Registry

    NARCIS (Netherlands)

    Oldgren, Jonas; Healey, Jeff S.; Ezekowitz, Michael; Commerford, Patrick; Avezum, Alvaro; Pais, Prem; Zhu, Jun; Jansky, Petr; Sigamani, Alben; Morillo, Carlos A.; Liu, Lisheng; Damasceno, Albertino; Grinvalds, Alex; Nakamya, Juliet; Reilly, Paul A.; Keltai, Katalin; Van Gelder, Isabelle C.; Yusufali, Afzal Hussein; Watanabe, Eiichi; Wallentin, Lars; Connolly, Stuart J.; Yusuf, Salim

    2014-01-01

    Background Atrial fibrillation (AF) is the most common sustained arrhythmia; however, little is known about patients in a primary care setting from high-, middle-, and low-income countries. Methods and Results This prospective registry enrolled patients presenting to an emergency department with AF

  18. Risk for non-smoking-related cancer in atherosclerotic patients

    DEFF Research Database (Denmark)

    Dreyer, L; Olsen, J H

    1999-01-01

    Some studies have suggested that the pathogenesis of atherosclerosis and that of cancer have common features, and in addition to tobacco smoking, oxidative stress, diet, and sex hormones have been considered as common etiological factors. To investigate whether there is an association between...... atherosclerosis and cancer, we evaluated the cancer pattern of patients with atherosclerosis of the aorta and of peripheral and cerebral vessels. A total of 69,485 patients with atherosclerosis were identified through the Danish National Registry of Patients between 1977 and 1989, and the incidence of cancer in...... this group was calculated by linkage to the Danish Cancer Registry for the period 1977-1993. No consistent excesses over the expected figures were seen for cancer at any site unrelated to tobacco smoking in either the total cohort or in subgroups. Specifically, we found no association at the individual...

  19. Second Primary Cancer after Diagnosis and Treatment of Cervical Cancer

    Science.gov (United States)

    Lim, Myong Cheol; Won, Young-Joo; Lim, Jiwon; Kim, Yeon-Joo; Seo, Sang Soo; Kang, Sokbom; Lee, Eun Sook; Oh, Jae Hwan; Kim, Joo-Young; Park, Sang-Yoon

    2016-01-01

    Purpose This study was conducted to investigate the incidence and survival outcomes of second primary cancers after the diagnosis of cervical cancer. Materials and Methods Data from the Korea Central Cancer Registry between 1993 and 2010 were reviewed and analyzed. Standardized incidence ratios (SIRs) of second primary cancers among women with cervical cancer were analyzed. Kaplan-Meier survival curves were constructed for cervical cancer patients with or without a second primary cancer. Results Among 72,805 women with cervical cancer, 2,678 (3.68%) developed a second primary cancer within a mean follow-up period of 7.34 years. The overall SIR for a second cancer was 1.08 (95% confidence interval, 1.04 to 1.12). The most frequent sites of second primary cancers were the vagina, bone and joints, vulva, anus, bladder, lung and bronchus, corpus uteri, and esophagus. However, the incidence rates of four second primary cancers (breast, rectum, liver, and brain) were decreased. The 5-year and 10-year overall survival rates were 78.3% and 72.7% in all women with cervical cancer, and for women with a second primary cancer, these rates were 83.2% and 65.5% from the onset of cervical cancer and 54.9% and 46.7% from the onset of the second primary cancer, respectively. Conclusion The incidence rates of second primary cancers were increased in women with cervical cancer compared to the general population, with the exception of four decreasing cancers. The 10-year overall survival rates were decreased in cervical cancer patients with a second primary cancer. PMID:26194366

  20. Pregnancy after treatment of breast cancer--a population-based study on behalf of Danish Breast Cancer Cooperative Group

    DEFF Research Database (Denmark)

    Kroman, N.; Jensen, M.B.; Wohlfahrt, J.;

    2008-01-01

    after breast cancer treatment. The present study is a ten-year update. MATERIAL AND METHODS: Danish Breast Cancer Cooperative Group has since 1977 collected population-based data on tumour characteristics, treatment regimes, and follow-up status on Danish women with breast cancer. Pregnancy history was...... added from the Danish Civil Registration System, the National Birth Registry, and the National Induced Abortion registry. Cox regression was used to estimate the risk ratio of dying among women with a pregnancy after breast cancer treatment compared with women without such experience. RESULTS: In all......, 10 236 women with primary breast cancer aged 45 years or less at the time of diagnosis were followed for 95 616 person years. Among these, 371 women experienced pregnancy after treatment of breast cancer. In a multivariate analysis that included age at diagnosis, stage of disease, and pregnancy...

  1. Design, set-up and utility of the UK facioscapulohumeral muscular dystrophy patient registry.

    Science.gov (United States)

    Evangelista, Teresinha; Wood, Libby; Fernandez-Torron, Roberto; Williams, Maggie; Smith, Debbie; Lunt, Peter; Hudson, Judith; Norwood, Fiona; Orrell, Richard; Willis, Tracey; Hilton-Jones, David; Rafferty, Karen; Guglieri, Michela; Lochmüller, Hanns

    2016-07-01

    Facioscapulohumeral dystrophy (FSHD) is a rare inherited neuromuscular disease estimated to affect 1/15,000 people. Through basic research, remarkable progress has been made towards the development of targeted therapies. Patient identification, through registries or other means is essential for trial-readiness. The UK FSHD Patient Registry is a patient initiated registry that collects standardised and internationally agreed dataset of self-reported clinical details combined with professionally verified genetic information. It includes four additional questionnaires to capture patient reported outcomes related to pain, quality of life and scapular fixation. Between 2013 and 2015, 518 patients registered 243 males, 241 females with a mean age of 47.8 years. Most of the patients have FSHD type 1 (91.7 %), and weakness of the facial (59.2 %) was the most prevalent symptom at onset, followed by shoulder-girdle muscles (53.3 %) and distal (22.45 %) or proximal lower limb weakness (14.8 %). 85.57 % patients were ambulant or ambulant with assistance at the time of registration, 7.9 % report respiratory insufficiency. The registry has demonstrated utility with the recruitment of patients for a natural history study of infantile onset FSHD, and the longitudinal analysis of patient-related outcomes will provide much-needed baseline information to power future trials. The internationally agreed core dataset enables national registries to participate in a "Global FSHD registry". We suggest that the registry's ability to interoperate with other large datasets will be instrumental for sharing and exploiting data globally. PMID:27159994

  2. A Comparison of Criteria to Identify Inflammatory Breast Cancer Cases from Medical Records and the Surveillance, Epidemiology and End Results Data base, 2007–2009

    OpenAIRE

    Hirko, Kelly A.; Soliman, Amr S; Banerjee, Mousumi; Ruterbusch, Julie; Harford, Joe B; Merajver, Sofia D; Schwartz, Kendra

    2013-01-01

    Inflammatory breast cancer (IBC) is a relatively rare and extremely aggressive form of breast cancer that is diagnosed clinically. Standardization of clinical diagnoses is challenging, both nationally and internationally; moreover, IBC coding definitions used by registries have changed over time. This study aimed to compare diagnostic factors of IBC reported in a U.S. Surveillance, Epidemiology, and End Results (SEER) registry to clinical criteria found in the medical records of all invasive ...

  3. Contemporary registries on P2Y12 inhibitors in patients with acute coronary syndromes in Europe: overview and methodological considerations.

    Science.gov (United States)

    Jukema, J Wouter; Lettino, Maddalena; Widimský, Petr; Danchin, Nicolas; Bardaji, Alfredo; Barrabes, Jose A; Cequier, Angel; Claeys, Marc J; De Luca, Leonardo; Dörler, Jakob; Erlinge, David; Erne, Paul; Goldstein, Patrick; Koul, Sasha M; Lemesle, Gilles; Lüscher, Thomas F; Matter, Christian M; Montalescot, Gilles; Radovanovic, Dragana; Lopez-Sendón, Jose; Tousek, Petr; Weidinger, Franz; Weston, Clive F M; Zaman, Azfar; Zeymer, Uwe

    2015-10-01

    Patient registries that document real-world clinical experience play an important role in cardiology as they complement the data from randomized controlled trials, provide valuable information on drug use and clinical outcomes, and evaluate to what extent guidelines are followed in practice. The Platelet Inhibition Registry in ACS EvalUation Study (PIRAEUS) project is an initiative of registry holders who are managing national or international registries observing patients with acute coronary syndromes (ACS). The aim of PIRAEUS is to systematically compare and combine available information/insights from various European ACS registries with a focus on P2Y12 inhibitors. The present publication introduces the 17 participating registries in a narrative and tabular form, and describes which ACS groups and which dual antiplatelet therapies were investigated. It sets the basis for upcoming publications that will focus on effectiveness and safety of the antiplatelets used. PMID:27532447

  4. Occupational radiation exposure and mortality: second analysis of the National Registry for Radiation Workers

    International Nuclear Information System (INIS)

    The National Registry for Radiation Workers (NRRW) is the largest epidemiological study of UK radiation workers. Following the first analysis published in 1992, a second analysis has been conducted using an enlarged cohort of 124 743 workers, updated dosimetry and personal data for some workers, and a longer follow-up. Overall levels of mortality were found to be less than those expected from national rates; the standardised mortality ratio for all causes was 82, increasing to 89 after adjusting for social class. This 'healthy worker effect' was particularly strong for lung cancer and for some smoking-related non-malignant diseases. Analysis of potential radiation effects involved testing for any trend in mortality risk with external dose, after adjusting for likely confounding factors. For leukaemia, excluding chronic lymphatic leukaemia (CLL), the central estimate of excess relative risk (ERR) per Sv was similar to that estimated for the Japanese atomic bomb survivors at low doses (without the incorporation of a dose-rate correction factor); the corresponding 90% confidence limits for this trend were tighter than in the first analysis, ranging from just under four times the risk estimated at low doses from the Japanese atomic bomb survivors to about zero. For the grouping of all malignancies other than leukaemia, the central estimate of the trend in risk with dose was closer to zero than in the first analysis; also, the 90% confidence limits were tighter than before and included zero. Since results for lung cancer and non-malignant smoking-related diseases suggested the possibility of confounding by smoking, an examination was made, as in the first analysis, of all malignancies other than leukaemia and lung cancer. In this instance the central estimate of the ERR per Sv was similar to that from the A-bomb data (without the incorporation of a dose-rate correction factor), with a 90% confidence interval ranging from about four times the A-bomb value to less than

  5. Second analysis of the National Registry for Radiation Workers. Occupational exposure to ionising radiation and mortality

    International Nuclear Information System (INIS)

    The National Registry for Radiation Workers (NRRW) is the largest epidemiological study of UK radiation workers. Following the first analysis published in 1992, a second analysis has been conducted based on an enlarged cohort of 124,743 workers, updated dosimetry and personal data for some workers, and a longer follow-up. Overall levels of mortality were less than those expected from national rates; the standardised mortality ratio (SMR) for all causes was 82, increasing to 89 after adjusting for social class. This 'healthy worker effect' was particularly strong for lung cancer and for some smoking-related non-malignant diseases. Analysis of potential radiation effects involved testing for any trend in mortality risk with external dose, after adjusting for likely confounding factors. For leukaemia excluding chronic lymphatic leukaemia (CLL) the central estimate of excess relative risk (ERR) per sievert (Sv) was similar to that estimated for the Japanese atomic bomb survivors at low doses (without the incorporation of a dose-rate correction factor); the corresponding 90% confidence limits for this trend were tighter than in the first analysis, ranging from just under four times the risk estimated at low doses from the Japanese A-bomb survivors to about zero. For the grouping of all malignancies other than leukaemia, the central estimate of the trend in risk with dose was closer to zero than in the first analysis; also, the 90% confidence limits were tighter than before and included zero. Since results for lung cancer and non-malignant smoking related diseases suggested the possibility of confounding by smoking, as in the first analysis an examination was made of all malignancies other than leukaemia and lung cancer. In this instance the central estimate of the ERR per Sv was similar to that from the A-bomb data (without the incorporation of a dose-rate correction factor), with a 90% confidence interval ranging from about four times the A-bomb value to less than zero

  6. Cancer Basics

    Science.gov (United States)

    ... Cancer? Breast Cancer Colon/Rectum Cancer Lung Cancer Prostate Cancer Skin Cancer Show All Cancer Types News and Features Cancer Glossary ACS Bookstore Cancer Information Cancer Basics Cancer Prevention & Detection Signs & Symptoms of Cancer Treatments & Side Effects ...

  7. Significant association between ABO blood group and pancreatic cancer

    Institute of Scientific and Technical Information of China (English)

    Julia; B; Greer; Mark; H; Yazer; Jay; S; Raval; M; Michael; Barmada; Randall; E; Brand; David; C; Whitcomb

    2010-01-01

    AIM:To evaluate whether the ABO blood group is related to pancreatic cancer risk in the general population of the United States.METHODS:Using the University of Pittsburgh's clinicalpancreatic cancer registry,the blood donor database from our local blood bank (Central Blood Bank),and the blood product recipient database from the regional transfusion service (Centralized Transfusion Service) in Pittsburgh,Pennsylvania,we identified 274 pancreatic cancer patients with previously determined serological ABO bloo...

  8. Thrombosis in ovarian cancer: a case control study

    OpenAIRE

    Metcalf, R L; Fry, D J; Swindell, R.; McGurk, A; Clamp, A R; Jayson, G C; Hasan, J

    2014-01-01

    Background: Thrombotic events are common in cancer patients and have been associated with an adverse prognosis in large registry-based studies. Methods: A retrospective cohort of 417 patients with ovarian cancer treated at a tertiary cancer centre between 2006 and 2009 was studied to identify the incidence and risk factors for thrombotic events and the prognostic impact of thrombosis. Patient outcomes were evaluated against a matched control group without thrombosis. Results: Ninety-nine thro...

  9. Estimation of National Colorectal-Cancer Incidence Using Claims Databases

    OpenAIRE

    Quantin, C.; Benzenine, E.; M. Hägi; Auverlot, B.; Abrahamowicz, M.; J. Cottenet; Fournier, E; Binquet, C.; Compain, D.; Monnet, E; Bouvier, A. M.; Danzon, A.

    2012-01-01

    Background. The aim of the study was to assess the accuracy of the colorectal-cancer incidence estimated from administrative data. Methods. We selected potential incident colorectal-cancer cases in 2004-2005 French administrative data, using two alternative algorithms. The first was based only on diagnostic and procedure codes, whereas the second considered the past history of the patient. Results of both methods were assessed against two corresponding local cancer registries, acting as “gold...

  10. Regional differences in recommended cancer treatment for the elderly

    OpenAIRE

    Ho, Vivian; Ku-Goto, Meei-Hsiang; Hui ZHAO; Hoffman, Karen E.; Smith, Benjamin D.; Giordano, Sharon H.

    2016-01-01

    Background Little is known about regional variation in cancer treatment and its determinants. We compare rates of adherence to treatment guidelines for elderly patients across Texas and whether local specialist supply is an important determinant of treatment variation. Methods Previous literature reviewed indicated 7 recommended courses of treatment for colorectal, pancreatic, and prostate cancer. We analyzed Texas Cancer Registry data linked with Medicare claims for the years 2004 to 2007 to...

  11. Conditional Survival in Patients with Advanced Pancreatic Cancer

    OpenAIRE

    Benjamin Kasenda; Annatina Bass; Dieter Koeberle; Bernhard Pestalozzi; Markus Borner; Richard Herrmann; Lorenz Jost; Andreas Lohri; Viviane Hess

    2016-01-01

    Background Cancer registry data suggest that conditional survival prognosis in patients with aggressive malignancies improves over time. We investigated conditional survival in patients with advanced pancreatic cancer. Patients and Methods In this retrospective study, we included all patients with advanced pancreatic cancer treated at four Swiss hospitals between 1994 and 2004. Main outcome was 6-month conditional survival, defined as the probability of surviving an additional 6 months condit...

  12. Evaluation of metrics and baselines for tracking greenhouse gas emissions trends: Recommendations for the California climate action registry

    OpenAIRE

    Price, Lynn; Murtishaw, Scott; Worrell, Ernst

    2003-01-01

    Executive Summary: The California Climate Action Registry, which was initially established in 2000 and began operation in Fall 2002, is a voluntary registry for recording annual greenhouse gas (GHG) emissions. The purpose of the Registry is to assist California businesses and organizations in their efforts to inventory and document emissions in order to establish a baseline and to document early actions to increase energy efficiency and decrease GHG emissions. The State of California has...

  13. Cancer Incidence Among Those Initiating Insulin Therapy With Glargine Versus Human NPH Insulin

    OpenAIRE

    Stürmer, Til; Marquis, M. Alison; Zhou, Haibo; Meigs, James B; Lim, Soo; Blonde, Lawrence; MacDonald, Eileen; Wang, Ray; LaVange, Lisa M.; Pate, Virginia; Buse, John B.

    2013-01-01

    OBJECTIVE To add to the evidence on comparative long-term effects of insulin analog glargine versus human NPH insulin on the risk for cancer. RESEARCH DESIGN AND METHODS We identified cohorts of initiators of glargine and human NPH without an insulin prescription during the prior 19 months among patients covered by the Inovalon Medical Outcomes Research for Effectiveness and Economics Registry (MORE2 Registry) between January 2003 and December 2010. Patients were required to have a second pre...

  14. External validation of nomograms for predicting cancer-specific mortality in penile cancer patients treated with definitive surgery

    OpenAIRE

    Yao Zhu; Wei-Jie Gu; Ding-Wei Ye; Xu-Dong Yao; Shi-Lin Zhang; Bo Dai; Hai-Liang Zhang; Yi-Jun Shen

    2014-01-01

    Using a population-based cancer registry, Thuret et al. developed 3 nomograms for estimating cancer-specific mortality in men with penile squamous cell carcinoma. In the initial cohort, only 23.0% of the patients were treated with inguinal lymphadenectomy and had pN stage. To generalize the prediction models in clinical practice, we evaluated the performance of the 3 nomograms in a series of penile cancer patients who were treated with definitive surgery. Clinicopathologic information was obt...

  15. Depression as a risk factor for overall and hormone-related cancer: The Korean cancer prevention study

    OpenAIRE

    Chang, Hyoung Yoon; Keyes, Katherine M.; Mok, Yejin; Jung, Keum Ji; Shin, Yee-Jin; Jee, Sun Ha

    2014-01-01

    Depression has been hypothesized to be a risk factor of cancer, especially hormone related cancers. However, few studies have been conducted with large enough sample size and sufficient follow up period to rigorously estimate these associations. We aim to examine the relationship between depression and risk of registry documented overall and hormone related cancers. In this 19 year prospective cohort study of general population, 601,775 Koreans aged 30 64 years had a biennial medical evaluati...

  16. Quality of pathology reporting is crucial for cancer care and registration: a baseline assessment for breast cancers diagnosed in Belgium in 2008

    OpenAIRE

    De Schutter, H.; Van Damme, N; Colpaert, C; Galant, Christine; K. Lambein; Cornelis, A; Neven, P.; Van Eycken, E

    2015-01-01

    Given the crucial role of pathology reporting in the management of breast cancers, we aimed to investigate the quality and variability of breast cancer pathology reporting in Belgium. Materials and methods: Detailed information on non-molecular and molecular parameters was retrieved from the pathology protocols available at the Belgian Cancer Registry for 10,007 breast cancers diagnosed in Belgium in 2008. Results: Substantial underreporting was shown for several clinically relevant non-molec...

  17. SpineData – a Danish clinical registry of people with chronic back pain

    Directory of Open Access Journals (Sweden)

    Kent P

    2015-08-01

    Full Text Available Peter Kent,1 Alice Kongsted,1,2 Tue Secher Jensen,2,3 Hanne B Albert,4 Berit Schiøttz-Christensen,3 Claus Manniche3 1Department of Sports Science and Clinical Biomechanics, University of Southern Denmark, Odense, Denmark; 2Nordic Institute of Chiropractic and Clinical Biomechanics, Odense, Denmark; 3Research Department, Spine Centre of Southern Denmark, Hospital Lillebaelt, Institute of Regional Health Research, University of Southern Denmark, Middelfart, Denmark; 4The Modic Clinic, Odense, Denmark Background: Large-scale clinical registries are increasingly recognized as important resources for quality assurance and research to inform clinical decision-making and health policy. We established a clinical registry (SpineData in a conservative care setting where more than 10,000 new cases of spinal pain are assessed each year. This paper describes the SpineData registry, summarizes the characteristics of its clinical population and data, and signals the availability of these data as a resource for collaborative research projects. Methods: The SpineData registry is an Internet-based system that captures patient data electronically at the point of clinical contact. The setting is the government-funded Medical Department of the Spine Centre of Southern Denmark, Hospital Lillebaelt, where patients receive a multidisciplinary assessment of their chronic spinal pain. Results: Started in 2011, the database by early 2015 contained information on more than 36,300 baseline episodes of patient care, plus the available 6-month and 12-month follow-up data for these episodes. The baseline questionnaire completion rate has been 93%; 79% of people were presenting with low back pain as their main complaint, 6% with mid-back pain, and 15% with neck pain. Collectively, across the body regions and measurement time points, there are approximately 1,980 patient-related variables in the database across a broad range of biopsychosocial factors. To date, 36 research

  18. Validity of preeclampsia-related diagnoses recorded in a national hospital registry and in a postpartum interview of the women

    DEFF Research Database (Denmark)

    Klemmensen, Ase K; Olsen, Sjurdur F; Osterdal, Marie Louise; Tabor, Ann

    2007-01-01

    In a population-based sample, the authors examined the validity of preeclampsia and related diagnoses recorded in a mandatory Danish national hospital discharge registry and in a standardized telephone interview of women who gave birth between 1998 and 2002. Using a "gold standard" for preeclampsia...... registry. A total of 21 of 2,951 women without preeclampsia (0.71%) had a preeclampsia diagnosis in the registry. All registrations of serious subtypes of preeclampsia reflected true cases. The positive predictive value of a preeclampsia diagnosis in the registry was 74.4%. Including interview data reduced...

  19. Tools and data services registry: a community effort to document bioinformatics resources.

    Science.gov (United States)

    Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé; Kalaš, Matúš; Rydza, Emil; Chmura, Piotr; Anthon, Christian; Beard, Niall; Berka, Karel; Bolser, Dan; Booth, Tim; Bretaudeau, Anthony; Brezovsky, Jan; Casadio, Rita; Cesareni, Gianni; Coppens, Frederik; Cornell, Michael; Cuccuru, Gianmauro; Davidsen, Kristian; Vedova, Gianluca Della; Dogan, Tunca; Doppelt-Azeroual, Olivia; Emery, Laura; Gasteiger, Elisabeth; Gatter, Thomas; Goldberg, Tatyana; Grosjean, Marie; Grüning, Björn; Helmer-Citterich, Manuela; Ienasescu, Hans; Ioannidis, Vassilios; Jespersen, Martin Closter; Jimenez, Rafael; Juty, Nick; Juvan, Peter; Koch, Maximilian; Laibe, Camille; Li, Jing-Woei; Licata, Luana; Mareuil, Fabien; Mičetić, Ivan; Friborg, Rune Møllegaard; Moretti, Sebastien; Morris, Chris; Möller, Steffen; Nenadic, Aleksandra; Peterson, Hedi; Profiti, Giuseppe; Rice, Peter; Romano, Paolo; Roncaglia, Paola; Saidi, Rabie; Schafferhans, Andrea; Schwämmle, Veit; Smith, Callum; Sperotto, Maria Maddalena; Stockinger, Heinz; Vařeková, Radka Svobodová; Tosatto, Silvio C E; de la Torre, Victor; Uva, Paolo; Via, Allegra; Yachdav, Guy; Zambelli, Federico; Vriend, Gert; Rost, Burkhard; Parkinson, Helen; Løngreen, Peter; Brunak, Søren

    2016-01-01

    Life sciences are yielding huge data sets that underpin scientific discoveries fundamental to improvement in human health, agriculture and the environment. In support of these discoveries, a plethora of databases and tools are deployed, in technically complex and diverse implementations, across a spectrum of scientific disciplines. The corpus of documentation of these resources is fragmented across the Web, with much redundancy, and has lacked a common standard of information. The outcome is that scientists must often struggle to find, understand, compare and use the best resources for the task at hand.Here we present a community-driven curation effort, supported by ELIXIR-the European infrastructure for biological information-that aspires to a comprehensive and consistent registry of information about bioinformatics resources. The sustainable upkeep of this Tools and Data Services Registry is assured by a curation effort driven by and tailored to local needs, and shared amongst a network of engaged partners.As of November 2015, the registry includes 1785 resources, with depositions from 126 individual registrations including 52 institutional providers and 74 individuals. With community support, the registry can become a standard for dissemination of information about bioinformatics resources: we welcome everyone to join us in this common endeavour. The registry is freely available at https://bio.tools. PMID:26538599

  20. Evaluation of participant recruitment methods to a rare disease online registry.

    Science.gov (United States)

    Johnson, Kimberly J; Mueller, Nancy L; Williams, Katherine; Gutmann, David H

    2014-07-01

    Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. PMID:24700441

  1. Evaluation of tumor registry validity in Samsung medical center radiation oncology department

    International Nuclear Information System (INIS)

    A tumor registry system for the patients treated by radiotherapy at Samsung Medical Center since the opening of a hospital at 1994 was employed. In this study, the tumor registry system was introduced and the validity of the tumor registration was analyzed. The tumor registry system was composed of three parts: patient demographic, diagnostic, and treatment information. All data were input in a screen using a mouse only. Among the 10,000 registered cases in the tumor registry system until Aug, 2002, 199 were randomly selected and their registration data were compared with the patients' medical records. Total input errors were detected in 15 cases (7.5%). There were 8 error items in the part relating to diagnostic information: tumor site 3, pathology 2, AJCC staging 2 and performance status 1. In the part relating to treatment information there were 9 mistaken items: combination treatment 4, the date of initial treatment 3 and radiation completeness 2. According to the assignment doctor, the error ratio was consequently variable. The doctors who did no double-checks showed higher errors than those that did (15.6%: 3.7%). Our tumor registry had errors within 2% for each item. Although the overall data quality was high, further improvement might be achieved through promoting sincerity, continuing training periodic validity tests and keeping double-checks. Also, some items associated with the hospital information system will be input automatically in the next step

  2. Cancer in British vegetarians: updated analyses of 4998 incident cancers in a cohort of 32,491 meat eaters, 8612 fish eaters, 18,298 vegetarians, and 2246 vegans 1 2 3 4

    OpenAIRE

    Key, Timothy J; Appleby, Paul N.; Crowe, Francesca L.; Bradbury, Kathryn E; Julie A Schmidt; Ruth C Travis

    2014-01-01

    Background: Vegetarian diets might affect the risk of cancer. Objective: The objective was to describe cancer incidence in vegetarians and nonvegetarians in a large sample in the United Kingdom. Design: This was a pooled analysis of 2 prospective studies including 61,647 British men and women comprising 32,491 meat eaters, 8612 fish eaters, and 20,544 vegetarians (including 2246 vegans). Cancer incidence was followed through nationwide cancer registries. Cancer risk by vegetarian status was e...

  3. The role of patient, tumour and system factors in socioeconomic inequalities in lung cancer treatment: population-based study

    OpenAIRE

    Forrest, L F; White, M.(Department of Physics, University of Adelaide, Adelaide, Australia); Rubin, G; Adams, J.

    2014-01-01

    Background: Reducing socioeconomic inequalities in lung cancer treatment may reduce survival inequalities. However, the reasons for treatment variation are unclear. Methods: Northern and Yorkshire cancer registry, Hospital Episode Statistics and lung cancer audit data sets were linked. Logistic regression was used to explore the role of stage, histology, performance status and comorbidity in socioeconomic inequalities in lung cancer treatment, for 28 733 lung cancer patients diagnosed in 2006...

  4. Study of cancer incidence among 8530 male workers in eight Norwegian plants producing ferrosilicon and silicon metal

    OpenAIRE

    Hobbesland, A.; Kjuus, H; Thelle, D S

    1999-01-01

    OBJECTIVES: To examine the association between cancer incidence, in particular incidence of lung cancer, and duration of work among employees in eight Norwegian plants producing ferrosilicon and silicon metal. METHODS: Among men first employed during 1933-91 and with at least 6 months in these plants, the incident cases of cancer during 1953-91 were obtained from The Cancer Registry of Norway. The numbers of various cancers were compared with expected figures calculated from age and cal...

  5. Socioeconomic and geographic determinants of survival of patients with digestive cancer in France

    OpenAIRE

    Dejardin, O; Remontet, L.; Bouvier, A. M.; Danzon, A.; Trétarre, B.; Delafosse, P.; Molinié, F; Maarouf, N; Velten, M; Sauleau, E.A.; Bourdon-Raverdy, N; Grosclaude, P.; Boutreux, S; de Pouvourville, G; Launoy, G

    2006-01-01

    Using a multilevel Cox model, the association between socioeconomic and geographical aggregate variables and survival was investigated in 81 268 patients with digestive tract cancer diagnosed in the years 1980–1997 and registered in 12 registries in the French Network of Cancer Registries. This association differed according to cancer site: it was clear for colon (relative risk (RR)=1.10 (1.04–1.16), 1.10 (1.04–1.16) and 1.14 (1.05–1.23), respectively, for distances to nearest reference cance...

  6. Validation of colorectal cancer surgery data from administrative data sources

    Directory of Open Access Journals (Sweden)

    Li Xue

    2012-07-01

    Full Text Available Abstract Background Surgery is the primary treatment for colorectal cancer for both curative and palliative intent. Availability of high quality surgery data is essential for assessing many aspects of the quality of colorectal cancer care. The objective of this study was to determine the quality of different administrative data sources in identifying surgery for colorectal cancer with respect to completeness and accuracy. Methods All residents in Alberta, Canada who were diagnosed with invasive colorectal cancer in years 2000-2005 were identified from the Alberta Cancer Registry and included in the study. Surgery data for these patients were obtained from the Cancer Registry (which collects the date of surgery for which the primary tumor was removed and compared to surgery data obtained from two different administrative data sources: Physician Billing and Hospital Inpatient data. Sensitivity, specificity, positive predictive value, negative predictive value and observed agreement were calculated compared to the Cancer Registry data. Results The Physician Billing data alone or combined with Hospital Inpatient data demonstrated equally high sensitivity (97% for both and observed agreement with the Cancer Registry data (93% for both for identifying surgeries. The Hospital Inpatient data, however, had the highest specificity (80%. The positive predictive value varied by disease stage and across data sources for stage IV (99% for stages I-III and 83-89% for stage IV, the specificity is better for colon cancer surgeries (72-85% than for rectal cancer surgeries (60-73%; validation measures did not vary over time. Conclusion Physician Billing data identify the colorectal cancer surgery more completely than Hospital Inpatient data although both sources have a high level of completeness.

  7. Cancer estimation of incidence and survival in Algeria 2014

    Directory of Open Access Journals (Sweden)

    Hamdi Cherif M

    2015-10-01

    Full Text Available Cancer is one of the major public health problems in Algeria. In the last 25 years, a significant increase in the incidence of the major types of cancers has been observed in both sexes. Moreover, the 5-year survival rate is low for the severe tumors due to a difficulty in access to cancer care and an incomplete health care framework. Cancer Registry of Setif, Algeria, has been recording cancer incidence, mortality, and survival since 1986 in collaboration with International Agency for Research on Cancer (IARC of Lyon. Cancer Registry of Setif is being a source of information for cancer planning and corresponding surveillance in the National Cancer Plan 2015-2019, starting in January 2015. Data is recorded by means of CanReg 5 software. This software is developed and provided by the International Agency for Research on Cancer (IARC of Lyon. It is designed specifically for cancer registration, and standardized to capture, control, and process the data. Estimation of cancer incidence in Algeria and survival rates are very important for surveillance, control, and planning of care. In men the incidence of lung, colorectal, bladder, prostate, and laryngeal cancers has significantly and steadily increased in the last decade. In women, the incidence of breast, colorectal, thyroid, and lung cancers has also increased significantly in the same period. Five-year survival rates for cancer of the stomach, colon, rectum, liver, lung, breast, cervix, ovary, and prostate in adults, and childhood leukemia are relatively low compared with other countries. The aim of our study was to estimate incidence and survival by means of Setif cancer registry data.

  8. Domestic Radon and Childhood Cancer in Denmark

    DEFF Research Database (Denmark)

    Raaschou-Nielsen, Ole; Andersen, Claus Erik; Andersen, Helle P.;

    2008-01-01

    Background: Higher incidence rates of childhood cancer and particularly leukemia have been observed in regions with higher radon levels, but case-control studies have given inconsistent results. We tested the hypothesis that domestic radon exposure increases the risk for childhood cancer. Methods......: We identified 2400 incident cases of leukemia, central nervous system tumor, and malignant lymphoma diagnosed in children between 1968 and 1994 in the Danish Cancer Registry. Control children (n = 6697) were selected from the Danish Central Population Registry. Radon levels in residences of children...... and the cumulated exposure of each child were calculated as the product of exposure level and time, for each address occupied during childhood. Results: Cumulative radon exposure was associated with risk for acute lymphoblastic leukemia (ALL), with rate ratios of 1.21 (95% confidence interval = 0...

  9. Existing data sources for clinical epidemiology: the Danish National Pathology Registry and Data Bank

    DEFF Research Database (Denmark)

    Erichsen, Rune; Lash, Timothy; Dutoit, Stephen Jacques Hamilton;

    2010-01-01

    epidemiological studies to be carried out. Such studies are of significant importance, for example in the search for novel prognostic and predictive biomarkers in the era of personalized medicine. Denmark has a wealth of highly-regarded population-based registries that are ideally suited to conduct this type of......Diagnostic histological and cytological specimens are routinely stored in pathology department archives. These biobanks are a valuable research resource for many diseases, particularly if they can be linked to high quality population-based health registries, allowing large retrospective...... epidemiological research. We describe two recent additions to these databases: the Danish National Pathology Registry (DNPR) and its underlying national online registration database, the Danish Pathology Data Bank (DPDB). The DNPR and the DPDB contain detailed nationwide records of all pathology specimens...

  10. [Pre-requisites, observations and benefits of the DGU trauma registry in Austria].

    Science.gov (United States)

    Mattiassich, G; Litzlbauer, W; Ortmaier, R

    2016-07-01

    The trauma registry of the DGU was founded in 1992 with the objective of collecting data on severely injured patients. The purpose of this registry, in which Austrian trauma units have taken part since 1998, is to answer questions related to the field of trauma management. Using the example of the Linz Trauma Center (UKH Linz), which has actively participated since 2012, the authors would like to share their experiences of collecting data in order to motivate other departments to participate in the trauma registry. We would like to make suggestions regarding implementation methods for high-quality data acquisition.However, the availability of essential human resources must be guaranteed, since the recording of data from severely injured patients sometimes takes 60-90 min. Additionally, an automatic data acquisition method is currently unavailable for technical reasons. PMID:27277937

  11. Development of a disease registry for autoimmune bullous diseases: initial analysis of the pemphigus vulgaris subset.

    Science.gov (United States)

    Shah, Amit Aakash; Seiffert-Sinha, Kristina; Sirois, David; Werth, Victoria P; Rengarajan, Badri; Zrnchik, William; Attwood, Kristopher; Sinha, Animesh A

    2015-01-01

    Pemphigus vulgaris (PV) is a rare, potentially life threatening, autoimmune blistering skin disease. The International Pemphigus and Pemphigoid Foundation (IPPF) has recently developed a disease registry with the aim to enhance our understanding of autoimmune bullous diseases with the long-term goal of acquiring information to improve patient care. Patients were recruited to the IPPF disease registry through direct mail, e-mail, advertisements, and articles in the IPPF-quarterly, -website, -Facebook webpage, and IPPF Peer Health Coaches to complete a 38-question survey. We present here the initial analysis of detailed clinical information collected on 393 PV patients. We report previously unrecognized gender differences in terms of lesion location, autoimmune comorbidity, and delay in diagnosis. The IPPF disease registry serves as a useful resource and guide for future clinical investigation. PMID:24691863

  12. Risk of cancer in relatives of patients with myotonic dystrophy

    DEFF Research Database (Denmark)

    Lund, M; Diaz, L J; Gørtz, S; Feenstra, B; Duno, Morten; Juncker, I; Eiberg, Hans Rudolf Lytchoff; Vissing, John; Wohlfahrt, J; Melbye, Mads

    2014-01-01

    BACKGROUND AND PURPOSE: Myotonic dystrophies (DM) are autosomal dominantly inherited neuromuscular disorders caused by unstable nucleotide repeat expansions. DM and cancer have been associated, but the pathogenesis behind the association remains unclear. It could relate to derived effects of the DM...... genotype in which case non-DM relatives of DM patients would not be expected to be at increased risk of cancer. To elucidate this, a population-based cohort study investigating risk of cancer in relatives of DM patients was conducted. METHODS: DM was identified using the National Danish Patient Registry...... and results of genetic testing. Information on cancer was obtained from the Danish Cancer Registry. A population-based cohort of 5 757 565 individuals with at least one relative was established using the Danish Family Relations Database based on kinship links in the Danish Civil Registration System...

  13. Cancer of the thyroid and 131I fallout in Norway

    International Nuclear Information System (INIS)

    From 1953 to 1962 Norway received relatively high levels of radioactive fallout. On the basis of extensive measurements in air, precipitation, food and humans, the dose to the thyroid due to 131I has been calculated. Cancer registration in Norway is practically completely efficient because of obligatory notification of the Cancer Registry by physicians, pathology laboratories, and the Central Bureau of Statistics of all cases or death certificates concerning cancer. Analysis of the Cancer Registry data from 1953 to 1980 concerning birth cohorts 1936 to 1961 indicates an overall increasing trend in thyroid cancer morbidity, most pronounced in female cohorts born 1930-50. The highest, most abrupt irregularities reveal a coincidence of high numbers with high 131I content in milk consumed during the years of prepuberty and puberty. Possible interpretations are discussed. (author)

  14. Survival in patients with breast cancer with bone metastasis

    DEFF Research Database (Denmark)

    Cetin, Karynsa; Christiansen, Christian Fynbo; Sværke, Claus;

    2015-01-01

    OBJECTIVES: Since population-based data on prognostic factors affecting survival in patients with breast cancer with bone metastasis (BM) are currently limited, we conducted this nationwide retrospective cohort study to examine the prognostic role of disease stage at breast cancer diagnosis and...... length of BM-free interval (BMFI). SETTING: Denmark. PARTICIPANTS: 2427 women with a breast cancer diagnosis between 1997 and 2011 in the Danish Cancer Registry and a concurrent or subsequent BM diagnosis in the Danish National Registry of Patients. PRIMARY AND SECONDARY OUTCOME MEASURES: Survival (crude......), following patients from BM diagnosis until death, emigration or until 31 December 2012, whichever came first. RESULTS: Survival decreased with more advanced stage of disease at the time of breast cancer diagnosis; risk of mortality during the first year following a BM diagnosis was over two times higher for...

  15. Registry-based outcome assessment in haemophilia: a scoping study to explore the available evidence.

    Science.gov (United States)

    Osooli, M; Berntorp, E

    2016-06-01

    Haemophilia is a congenital disorder with bleeding episodes as its primary symptom. These episodes can result in negative outcomes including joint damage, loss of active days due to hospitalization and reduced quality of life. Effective treatment, however, can improve the outcome. Registries have been used as a valuable source of information regarding the monitoring of treatment and outcome. The two main aims of this exploratory study were to establish which haemophilia registries publish peer-reviewed outcome assessment research and then to extract, classify and report the treatment outcomes and their extent of use in the retrieved registries. Using relevant keywords, we searched PubMed and Web of Science databases for publications during the period 1990-2015. Retrieved references were screened in a stepwise process. Eligible papers were original full articles on haemophilia outcomes that used data from a computerized patient database. Descriptive results were summarized. Of 2352 references reviewed, 25 full texts were eligible for inclusion in the study. These papers were published by 11 registries ranging from local to international in coverage. It is still relatively rare for registries to produce peer-reviewed publications about outcomes, and most that currently do produce such papers are located in Europe and North America. More information is available on traditional outcomes such as comorbidities and arthropathy than on health-related quality of life or the social and developmental impact of haemophilia on patients. Inhibitors, HIV and viral hepatitis are amongst the most commonly reported comorbidities. Research has focused more on factor consumption and less on hospitalization or time lost at school or work due to haemophilia. Haemophilia registries, especially those at the national level, are valuable resources for the delivery of effective health care to patients. Validated outcome measurement instruments are essential for the production of reliable and

  16. Increasing rates of surgical treatment and preventing comorbidities may increase breast cancer survival for Aboriginal women

    OpenAIRE

    Supramaniam, Rajah; Gibberd, Alison; Dillon, Anthony; Goldsbury, David Eamon; O’Connell, Dianne L

    2014-01-01

    Background Lower breast cancer survival has been reported for Australian Aboriginal women compared to non-Aboriginal women, however the reasons for this disparity have not been fully explored. We compared the surgical treatment and survival of Aboriginal and non-Aboriginal women diagnosed with breast cancer in New South Wales (NSW), Australia. Methods We analysed NSW cancer registry records of breast cancers diagnosed in 2001–2007, linked to hospital inpatient episodes and deaths. We used unc...

  17. BRCA sequencing and large rearrangement testing in young Black women with breast cancer

    OpenAIRE

    Pal, Tuya; Bonner, Devon; Cragun, Deborah; Johnson, Sharland; Akbari, Mohammad; Servais, Lily; Narod, Steven; Vadaparampil, Susan

    2013-01-01

    Young Black women in the United States are disproportionately afflicted with breast cancer, a proportion of which may be due to BRCA1 and BRCA2 (BRCA) gene mutations. In a cancer registry-based sample of young Black women with breast cancer, we evaluated: (1) the prevalence of BRCA mutations detected through full gene sequencing and large rearrangements testing and (2) proportions that accessed genetic services pre-dating study enrollment. Black women diagnosed with invasive breast cancer ≤ag...

  18. Spatio-temporal analysis of female breast cancer incidence in Shenzhen, 2007–2012

    OpenAIRE

    Zhou, Hai-Bin; Liu, Sheng-Yuan; Lei, Lin; Chen, Zhong-Wei; Peng, Ji; Yang, Ying-Zhou; Liu, Xiao-li

    2015-01-01

    Introduction Breast cancer is a leading tumor with a high mortality in women. This study examined the spatio-temporal distribution of the incidence of female breast cancer in Shenzhen between 2007 and 2012. Methods The data on breast cancer incidence were obtained from the Shenzhen Cancer Registry System. To describe the temporal trend, the average annual percentage change (AAPC) was analyzed using a joinpoint regression model. Spatial autocorrelation and a retrospective spatio-temporal scan ...

  19. Tobacco chewing and female oral cavity cancer risk in Karunagappally cohort, India

    OpenAIRE

    Jayalekshmi, P A; Gangadharan, P.; Akiba, S; Nair, R R K; Tsuji, M.; Rajan, B.

    2009-01-01

    This study examined oral cancer in a cohort of 78 140 women aged 30–84 years in Karunagappally, Kerala, India, on whom baseline information was collected on lifestyle, including tobacco chewing, and sociodemographic factors during the period 1990–1997. By the end of 2005, 92 oral cancer cases were identified by the Karunagappally Cancer Registry. Poisson regression analysis of grouped data, taking into account age and income, showed that oral cancer incidence was strongly related to daily fre...

  20. Cancer risk in Swedish women: the relation to size at birth

    OpenAIRE

    Andersson, S W; Bengtsson, C; Hallberg, L.; Lapidus, L; Niklasson, A; Wallgren, A; Hulthén, L

    2001-01-01

    The relationship between fetal growth as indicated by weight and length at birth, and cancer risk in 1080 adult Swedish women was examined. Birth factors were retrieved from original midwife records for the years 1914, 1918, 1922 and 1930, and primary cancer cases were identified by matching with national and regional cancer registries through the year 1998. A positive and statistically significant increased risk for cancer was found with increasing birth weight or birth length for all site c...